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.)

The film is principally about the abuse of ME patients, children and adults, in the medical and social services sectors; it is not a bio-pic of any particular sufferer, nor is it really about what it is like to have ME. Although a video appeal by Giles Meehan for the proposed ME research centre in Norwich was played before the film, the film itself did not cover the issue of research, or the lack of funding for it, or the question of which type of virus causes ME, or how ME came to be seen as a psychological rather than a physical illness. The emphasis was firmly on the mistreatment, the lack of availability of appropriate treatment, the devastating effects of graded exercise, the struggles (not always successful) to keep suffering relatives out of the hands of professionals who would impose it on them, and otherwise treat them harshly. The story of Sophia Mirza’s ME is wholly bound up with her sectioning and subsequent relapse and death and so it was included in her part of the story; by contrast, Lynn Gilderdale’s death was not described, which is no bad thing as the story has been told time and again in almost every media interview with her mother.

Having read three of the five sufferers’ stories elsewhere, I generally knew what was coming, so the film was not as hard-hitting for me as it might have been for others, and particularly for those with little or no familiarity with this subject. The exceptions were the section on Naomi, part of whose story is told in Lost Voices but the story of her treatment in hospital is not in the book; there was video footage in this film of her attempting the graded exercises, with the nurse telling her at one point that it would be as easy to walk to the chair at the other end of the table as to retreat to the one she had got up from — I kept wanting to say “don’t do it, Naomi!” — and the audio recording of Sophia Mirza’s attempts to put off being sectioned after police and social workers had broken her door down in 2003. She was heard trying to persuade them that she had in fact improved over six months (since her mother had been threatened that she would be sectioned if she did not get better) and pleading to be taken to an ME clinic instead, whereupon she was told that she had already had two opportunities to go to such a place.

The film described the devastating effects of graded exercise on several of the patients, as well as the negative influence of psychiatrists; Kay Gilderdale was shown saying that all their dealings with them were destructive, and they nearly killed Lynn. Naomi and her mother were both extensively interviewed (she was the only patient who could be interviewed), and they both recounted the terrible treatment she had received while in hospital, and the hostility she had encountered from nurses who worked their way down the ward, greeting the other children with smiles but “the mask slipped” when they got to her. There was footage, and her own description, of her life now; much of it spent either sitting and looking out of the window, which sometimes she loves doing but at other times makes her sad as it reminds her of what she is missing, or lying in bed, her bedroom darkened. This section of the film is really valuable, as someone is able to give a coherent description of what it is like to have severe ME for a long time, and it was very powerful.

Linda Crowhurst was too ill to be interviewed, but some video footage was shown of her saying she was in agony, desperate to use the loo but unable to be touched (and therefore moved) as it would cause her so much pain. Greg Crowhurst, her husband, described the extreme difficulty of finding anyone who believed in her illness enough to treat it; one psychologist told her she was simply “afraid of standing”. Professor Malcolm Hooper emphasised that ME was a physical illness with much in common with MS, not a psychiatric condition; Dr Nigel Speight, a paediatrician with a long history of dealing with children with ME, noted that doctors sometimes refer children with ME back to their GPs, or prescribe GET and become increasingly hostile to the children as the treatment produces the opposite of the intended effect. The story of “B”, who is fifteen and whose family still fear further intervention from social services, was told by a male voice-over who was not related to her; the story was illustrated by stills of her empty room changing with the time of day. She was taken from her family and put on a locked ward after her family resisted attempts to force her onto graded exercises; she eventually became bedridden (as she still was, at the time the film was made) and for a while lost the ability to speak. The family managed to extricate her from the care system by involving the Young ME Sufferers’ Trust, which had access to the experts who could demonstrate that her ME was a physical illness and could not be helped with the graded exercises being imposed on her.

In short, this was a very powerful documentary on this most pressing aspect of the ME situation. When I reviewed Kay Gilderdale’s book in April, I wrote:

What this is not is any kind of investigation as to how widespread the kinds of abuses Lynn suffered were, or are, and such a book is sorely needed and Lynn’s story would no doubt feature heavily in it. There have been countless stories since of people with ME, including severe ME, suffering because of the disbelief of doctors who insisted that their illness was being ‘encouraged’ or was the result of abuse, leading to children being removed from their families or threatened with such action.

While this documentary names no names in terms of who is responsible for the abuse (as, for example, a Panorama documentary in 1999 did) and does not mention the role of people like Simon Wessely, Peter White et al, or even what parts of the country the sufferers came from it does show that the abuse is widespread and has carried on long after it should have been obvious that the treatments they had been using did not work, and long after the scandals of the 1990s were exposed. One would hope that more people in the UK can see it, and particularly that it can be made available to those in the nursing and medical professions, and particularly students and those at a junior level as their minds are the most open to influence (there are quite a few junior doctors and GPs who have never heard of ME). I believe it needs a British audience much more than it needs an American one: the cases discussed are all of British people who lived in the UK and were treated in British hospitals. Much the same may happen in the USA, but the documentary does not show that (and does not mention anything of the history of “chronic fatigue syndrome” in the States) and we do not need Americans self-righteously pointing fingers as if this were typical of British healthcare, or “how the Brits treat the sick”, when a large percentage of Americans simply cannot afford healthcare of any sort, a state of affairs that is unlikely to change soon.

After the film, there was a discussion involving Dr Speight, Declan Carroll of the Irish ME Trust, and a Labour councillor on Camden Council (no more senior politician was available). The councillor talked a lot about disability in general, and I recall him saying that the council was doing nothing about ME, but called for “stupid legislation” such as the Disability Discrimination Act to be abolished and replaced with laws with more substance. As for Dr Speight, I most clearly remember his answer to one of my questions, namely why doctors and social workers were so vicious to patients with severe ME. He replied that the profession had changed considerably in the last 30 years ago, being much more open to patients’ opinions than it had been; in the past, doctors were paternalistic, convinced they knew best, and sometimes apt to lie to patients about their condition. However, ME remains one area where doctors still feel they can bully patients. He also mentioned that social workers deal often with very hostile families on council estates, some of whom set the dog on them, so when they are expected to deal with a quiet and pleasant middle-class family with a bed-bound daughter, they get a sense of power that they had been unable to access when dealing with their usual “clients”, and exercise it freely.

At the moment, there is no further opportunity to see this film; people in the ME community who were unable to get to either of the two screenings are clamouring for a DVD release, but the producers say they are “waiting to hear from an international distribution company”. I should add, though, that people with ME are not the best audience for this, and children with ME (let alone severe ME) should not be shown, as the producers have already advised — it will cause them an awful lot of distress. I should add that friends of people whose stories are featured in the film are unlikely to learn anything new from it that their friends haven’t already told them. Particularly in the light of the dreadful coverage of the “death threat” accusations last summer, those in the media should see this for their own education. It demonstrates amply who are the victims in this whole affair, and who, unlike their accusers, do not have the luxury of being able to flee to the alleged safety of Iraq or Afghanistan. They should be able to feel safe where they are: their homes, their beds, and when necessary, their local hospital. In the light of recent events elsewhere in the world, it has become the mark of a despotic regime that people are not safe in hospital — this is, in fact the case for some of our own sickest and most vulnerable people. It is not worthy of a civilised, advanced country like ours.

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”.

Earlswood was founded in 1855 as an “asylum for idiots”; when the NHS took over such institutions in the 1940s, it came to be called a hospital. The conditions, however, gradually deteriorated until the place closed in 1997, due to underfunding and understaffing. A documentary broadcast in the 1980s (a clip was shown in this programme) exposed the shocking conditions and practices in places like it: someone strapped to a post (standing) for hours, with others imprisoned in an outside grassy area, with the staff on the outside pushing food through the wire fence, with one half-naked man, who was said to crave attention and “mothering” (from anyone, male or female), laying his head down on another patient’s body, and shown to have marks on his body from the violence of staff and other patients. A male nurse, who worked at Earlswood at some point, related that he had witnessed a man being locked outside, naked, in the snow as a punishment for challenging behaviour; when he reported this abuse, the staff were told he had informed on them and immediately set him to the dirty jobs and made his life difficult, eventually leading to his resignation. Patients had to wear communal clothes, and one man complained that the underwear had urine stains on it.

This man now lives semi-independently, doing his own shopping and getting round town (somewhere in Sussex) on a scooter. He would presumably, always have been capable of doing this, but the powers that were at the time did not consider it worth enabling him to do so. A woman who had lived at Earlswood, also now in a nursing home, is said to have blossomed since the institution closed; her younger sister said that it had now been a joy to visit her, rather than a duty which she dreaded. The programme-makers managed to find various nurses that remembered Bowes-Lyons, and one in particular recalled that the sisters would be glued to the TV if any royal occasion were on, in their younger days curtseying to members of the royal family in front of the TV, but later simply saluting (presumably as they got stiffer in their old age).

The BBC have, in the past, made a history of the mental health system in post-war Britain, from the over-crowded asylums of the 1940s to “care in the community” in the 1980s and 1990s. There were some echoes of this in the Channel 4 documentary, with a speech that sounded a lot like Enoch Powell’s “water tower” speech replayed. The programme traced public attitudes to learning disability to the early 20th century, when eugenics began to gain popularity. Learning disabilities came to be associated with all manner of negative traits including criminality, and having a relative with such a disability became a matter of shame as it was assumed to be hereditary, so it automatically lowered the value of anyone related to them. This may have been one of the reasons why Elizabeth and Nerissa Bowes-Lyon were hidden from view and ostracised; the family misinformed Burke’s Peerage that the sisters had died in 1940. Another reason was that the family may have found it difficult to cope, as the support network was not there as it is now. While that may be credible for a family of modest means, it has no merit as far as a family as wealthy and privileged as the Bowes-Lyons. They could have provided for the girls, and could have paid for drastic improvements to the conditions at Earlswood or even founded their own institution, but chose not to — they simply abandoned them instead.

I don’t find the criticism that it reveals nothing new to be particularly significant, anyway. Documentaries often aren’t meant to be revelatory; very often, they are simply retellings of history. Not everyone alive now was alive in 1987, and certainly not everyone was an adult in 1987 (I wasn’t) and therefore might not remember the original scandal very well. It could, perhaps, have focussed more on the history of care for the learning disabled, and how not everyone released from the long-stay hospitals blossomed in provincial nursing homes — others were dumped on housing estates and became targets for gratuitous harassment and violence (in some cases murder) from local yobs. It presented institutional abuse of such people as a thing of the past, when in fact, abuse persisted after the long-stays closed, as the scandal of the Longcare homes in the 1990s and the more recent Winterbourne View exposé, featuring some of the same type of abuse mentioned in this programme demonstrate. So, in a sense, the programme does disappoint and presents an overly rosy view of how we deal with those with learning disabilities since the closure of the big rural “hospitals”, but the lack of new material about the Bowes-Lyons is a pretty trivial criticism.

Humphries’ programme started by interviewing various people who were claiming benefits and giving some recollections about “his day” when he was growing up in Splott in Cardiff. Apparently back then, not working carried some degree of stigma, and there was one man in the neighbourhood who did not work, for some unspecified reason, and he was shunned by the community for that. The reason could, of course, have been quite genuine — he may well have had a disability or some health problem that he did not feel comfortable discussing with all and sundry. He interviewed various benefit claimants, including a family of several children with a single mother, a long-term unemployed family in an ex-industrial northern town where the father had calculated that working would not make him much better off than staying on benefits, a family from Spain who were on housing benefit so they could live in Islington, and a woman with ME who had been failed by her ATOS assessment (although she easily won on appeal).

The whole thrust of Humphries’ argument was the need to cut the benefits bill, ignoring the issue of whether what the bill pays for is worth paying for or necessary. The reason why a modest flat in a district close to central London, where the work is, costs so much was conveniently glossed over (it was nothing like that expensive twenty years ago, before prices and rents became inflated by the sale of council properties and buy-to-let mortgages). Why a man in a northern town regards the work that is available as not worth doing was not asked (the fact is that there were serious jobs in the north until the factories and mines were closed down, and a large town like Middlesbrough cannot survive with just supermarkets and council jobs). The history of unemployment and benefits in the UK is a history of political decisions — unemployment figures (derived from numbers of dole claimants) used to threaten workers not to go on strike or demand rights, incapacity benefits later used to artificially reduce unemployment numbers, and so on. None of this is of the current claimants’ making, so we saw someone who had never had to worry about finding a job, not for a good few decades at least, making someone from a community which had been deliberately impoverished look like a scrounger. If you have ever had the notion to tell someone, “I’ve worked hard all my life”, you should consider yourself lucky that you had the opportunity to do that. Some people do not.

Humphries also travels to New York to interview officials and charity workers involved with the “workfare” scheme there, and those dealing with its fallout. Early on, he presents it as a system whereby benefits are delivered only to those who prove that they are looking for work — the same is true of Jobseekers’ Allowance in the UK, in which claimants are required to keep a diary of their ongoing search for work, and are given jobs to apply for. Towards the end, he showed some of the soup kitchens and charity food outlets that have appeared in New York to serve people who are unable to receive welfare as their two-year allowance has run out with no work in sight. He also interviewed two women who had been in white-collar jobs and made redundant, and were afraid for the future as they had found themselves unable to get any more work. This provided some counter-balancing to the sermons from middle-class men in suits about personal responsibility (one of them claimed that people went back on welfare because they lacked the personal organisation to keep a job. But it did not seriously examine why people lost jobs and could not find anything else: people will not employ them, often because they are “overqualified”, and it might be assumed that they will not stay if employed, or they do not have experience, or the social skills the human resources department decrees that the job requires.

Last week’s Panorama really did bring the programme to a new low — the 30-minute format is something I have criticised again and again (such as here) as it lends itself to sensationalism rather than to serious investigation, but this just was not Panorama — it was more like a cheap prime-time infotainment piece, a bit like Saints and Scroungers without the “saints” (who were often people who helped the poor and disabled find benefits they were entitled to). The aim was obviously to show that the benefit bill was as high as it was because of fraud, and that “fraud costs all of us”, but the over-investigation of fraud can sometimes detract from the purpose of the benefit and make life very difficult for real claimants, so as to satisfy the mid-market tabloids. Nobody would object to someone who had been found out claiming benefits when they are not living in the country, or were perfectly well-off in their own right, or not as disabled as they claim to be, being punished or having their benefits cut, but some benefits are in fact not means-tested and the programme did not make that clear. It also did not mention that the rate of disability benefit fraud is extremely low, and therefore the cost of welfare is not being significantly inflated by fraud; it is just high because there is a lot of disability, and some people’s needs are severe and complex.

What makes this all the more disgusting is that excuses are being manufactured to “cut the benefits bill” at a time of scarcity when many people are falling into poverty. The same cannot be said of the introduction of Jobseekers’ Allowance under John Major — that happened in 1996, after the early 1990s recession had ended, although with much the same media baiting of the “workshy”. This time round, it is benefits as a whole that are being attacked, with the media — not just the newspapers which support the Tories because their wealthy owners tell them to, but the BBC which is paid for by public subscription — joining in the chorus. We have a welfare system partly to make sure people do not fall into destitution, partly to make sure that people with disabilities and other complex needs can live dignified and productive lives, and partly to pay for the costs of ideological trends (such as globalisation) and political decisions. If we wish to cut the benefits bill, we need to get people working, and that means reducing our reliance on imported manufactured goods, for a start. People who can work, and are offered a serious job (that is, one with prospects), will do so. Those who cannot, because of their own or a dependent’s disability (or because of prejudice, or some other genuine reason), must be supported. The alternative is to lose our status as a civilised country.

EB stands for epidermolysis bullosa, which means skin breakdown and blistering; it means the skin is very fragile (hence the “butterfly” comparison), and is liable to come apart and blister with any friction or pressure (there are different levels of severity; hers seems to be quite severe but, for example, she is still able to walk, while some sufferers require a powered wheelchair, and she can eat soft foods — the condition affects the inside of her mouth and throat also — while others must be tube-fed). It is very rare, and there is one charity which serves the EB community, called Debra, which is very well-regarded (unlike, for example, many of the charities in the ME world). The programme featured interviews with Sam and her parents, and much later, her brother. At home, she has carers to change the dressings on her skin; she takes the trip to the USA with her brother and as the only female, she must change them herself. There is a scene in the programme in which she is interviewed preparing for the dressing change, interspersed with an interview with her brother, who is quite emotional as he tells us that there was a point where she nearly died when she was younger, and he faces the possibility of her not living very long.

The pair drive their Jeep (Sam actually does the driving) hundreds of miles across various prairie states, having received the information that a storm is brewing several hundred miles to the east of where their hotel was. After that information disappoints, they get another bit of information that takes them yet another few hundred miles east, and this time they get what they want: a view of a “funnel tornado”, with dramatic skies and buckets of rain. Eventually, their way is blocked by local police, and their activities turn to advising local people of how not to get hurt. Surveying the devastation in Joplin, she is obviously quite distressed.

However, in the latter part of the programme I found myself wondering what the locals thought of Sam and her brother as they themselves were in fear of their own lives and those of their families and friends, while these two drove across the country to see the storms for a thrill. I accept that she is not hurting anyone and am glad she is able to pursue a hobby beyond her home when she has a potentially very life-limiting condition (the person who alerted me to this programme has severe ME and could not even dream of it), but it seems a bit ghoulish to be getting thrills out of a phenomenon which destroys peoples homes, livelihoods and even lives, while being able to return safely home to mostly tornado-free Warrington*. The programme did give some insight into life with EB without making her out to be a tragic case, but no attempt was made to question this aspect of the pursuit.

* Yes, I know we do get tornados in England — I remember the one in west London in 2007 well as I was quite near where it hit. But they cause nothing like the devastation they do in the USA.

Last week I saw a programme on Channel 4, broadcast late at night (no doubt because it contains footage of people being killed), which purports to expose war crimes committed by the Sri Lankan government and army during the campaign to defeat the Tamil Tigers in 2009, which ended with all “Tiger”-held territory taken and the rebel leadership dead. Various claims were made by surviving Tamils of the government deliberately bombing areas where they knew there were civilians, of them shelling the same place twice, ten minutes apart, so as to injure or kill those tending to the wounded, and of them offering a “no-fire zone” to civilians then bombing it; the programme also included mobile phone footage of captured “Tigers” being killed and of women’s bodies being displayed openly and naked, some showing signs of having been raped. The women included the “Tigers’” TV propagandist known as Issipriya.

The programme was presented by Jon Snow, who noted that the “Tigers” used child soldiers and suicide bombers, but only a few short minutes — if that — of the programme included mention of the rebels’ atrocities for the preceding decades of the civil war. The rest was dedicated to claims of atrocities by the government in the last few weeks. On the surface of it, it might make more sense to draw attention to the crimes of a government that is in power than to those of a rebel army which is defeated and whose leadership is dead, but the programme failed to consider the issue of whether the defeat of the “Tigers” was necessary.

Most people would support the idea of an oppressed minority having self-determination; the problem is that the “Tigers” did not offer a democratic Tamil state but a manner of governance that was compared to that of Pol Pot. In this report in the Independent from 1994, for example, the execution of two commanders, both popular and regarded as moderates, in Jaffna was described; at the time, the atmosphere was said to be thick with suspicion, with nine “betrayers” being publicly shot and a hundred purged from the leadership. The régime was also busy recruiting child soldiers, each of which carried a cyanide capsule around their neck, by showing a recruitment video for the “Black Tigers”:

In the video, a boy leaps jubilantly in the air when his name is picked for a mission, and he is shown dutifully sweeping the barracks before he hops into a bomb-laden car and blows himself to bits. The only perk for the assassins is they are treated to a lavish supper with Prabakharan before their final mission.

A more recent report, written by a former “Tiger” sympathiser just after the end of the civil war, mentions the strategic blunders by the military leader, Prabhakaran, that led to his army’s defeat, mostly brought about by his “paranoiac suspiciousness and intolerance of dissent” (among them was using the 2002 ceasefire to re-arm, when they were supposed to be decommissioning). If anyone looks at the map of the Tamil State proposed by the “Tigers”, they will see that it occupies nearly all of the country’s coastline, leaving the state of Sri Lanka with only the south and the southern part of the west coasts. The idea that the Sri Lankan government would have agreed to that is preposterous (although the “Tigers” might have agreed to less, particularly in the south and east). Not mentioned by Jon Snow is their ethnic and religious cleansing of Muslims and Catholics from the North, the looting of their property, and their extortion of Muslims in eastern Sri Lanka. (Prabhakaran later apologised and invited Muslims back during the 2002 ceasefire; there have also been claims of attacks on Muslims by Sinhalese, including a comment on this blog that alleged, “Buddhist monks and their lackeys have been terrorizing both Muslim and Hindu populations in my father’s home country of Sri Lanka for decades now”.)

Most of the evidence of atrocities consists of claims by a small number of Tamil survivors, and while I am not going to claim that the Sri Lankan army acted impeccably, much of the footage does not prove that atrocities were committed. As the programme admitted, the “Tigers” had the respect of much of the Tamil population; there was a mass migration in which, no doubt, a substantial number of rebels also took part as they were expelled from their capital, Kilinochhi. Footage was shown of what was alleged to be captured combatants being executed, which was called “murder” by one expert on international law. The fact is that, like so much of modern international law, these laws were invented by Europeans to govern their wars, while Europeans dominated much of the rest of the world (including Sri Lanka) and that other civilisations have allowed such executions. We were also not told whether those killed were commanders or ordinary soldiers, or whether they were known terrorists (something the soldiers might have known about, but the home viewer in the UK, not knowing much about the country, would not).

The programme also alleged that two members of the “Tigers’” civilian leadership voluntarily surrendered to the Sri Lankan government forces and were subsequently killed. Again, this gives the impression that they were the civilian leadership of a normal state that was involved in a war, rather than a terrorist operation that carried out massacres, ethnic cleansing, suicide bombings, mass murders of civilians and various other criminal activities, i.e. a grand-scale criminal organisation. Their role in the organisation was, of course, not mentioned in the programme. It is not the first time the civilian leadership of a state, or entity with pretensions to statehood, has been executed after capture. True, the leaders of the Nazi state that were captured were tried, but how necessary a trial is when crimes were committed in full public view is debatable and some might argue that it is nothing more than an unnecessary ritual humiliation. Of course, nowadays we would not execute a genuine war criminal, even Ratko Mladic or Radovan Karadzic, as the death penalty is now abolished throughout Europe. The reasons for abolishing the death penalty for ordinary crimes in the west are quite strong — notably, the well-documented risk of someone being put to death on the basis of prejudice or political convenience — but these were not men suspected of killing someone during a robbery.

When crushing a force such as the Tamil “Tigers”, they need to be well and truly crushed and their leadership decapitated, such that their supporters and those that suffered from their oppression and terror know that they are not coming back. There are still those who will vigorously defend those acts in World War II in which civilians were killed where not strictly necessary for combat — the bombings of Hiroshima and Nagasaki as well as some of the bombings of German cities, for example — on the grounds that they averted possibly greater numbers of military and civilian deaths elsewhere or hindered the production of weapons for the enemy. Nobody was prosecuted over those acts (much as has been the case in any subsequent wars when western powers have been involved), and it was not military commanders that were killed but ordinary people. Where the makers of this programme stand on those matters I have no idea, but getting rid of the Tamil “Tigers” was something that needed doing, much as the defeat of Nazi Germany and imperial Japan was. Who are we to point the finger at any other country when a very necessarily war is won, but not entirely cleanly?

Map source: Wikimedia.

I wrote a review of Kay Gilderdale’s memoir of living with and caring for her daughter Lynn (also Jessie), who suffered from ME very severely from 1992, when aged 14, until her death in 2008. The editor of the disability blog Same Difference, Sarah Ismail, asked me to write it as a guest blog for her site, so you can find it at the link above. (The woman referred to in the last paragraph, who came out of hospital worse than she went in, is Jenny Rowbory.)

Francesca Montoya, known as Cesca, was the Spanish teacher, and was approached by sixth-former Jonah Kirby, whose father was something of a disciplinarian who distrusts schools anyway and had attempted to home-school them before being persuaded to enrol Jonah and his younger sister Ruth. Cesca initially rebuffed Jonah’s advances, but eventually they fell in love and slept together at Cesca’s house, resulting in her becoming pregnant. She nearly aborted their baby, but decided she could not go through with it, and they resolved to get married. Unfortunately for them, various pupils became aware of the situation, and when she was rushed to hospital towards the end of the last episode, Jonah rushed to be at her side. They were discovered together by Mr Mead (who had, earlier in the series, been sleeping with the head-teacher’s daughter) and taken back to see said headteacher, who called both Jonah’s father (who dragged him out of the building) and the police, who arrested Montoya, who was charged, and bailed on the condition she does not see Jonah. However, they elope, Mead follows them and calls the police again, and although they have time to marry, Montoya is re-arrested in her wedding dress as soon as the ceremony is done.

As ever, there are a few absurdities in the storyline. Someone of Spanish origin would be called Francisca, not Francesca (that’s Italian). If a parent really dragged a pupil away as violently as Jonah’s dad did in the last-but-one episode, in front of several members of staff, the school really would have to intervene, yet they did not. While Gretna Green (and other Scottish registry offices) do conduct marriages for under-18s without their parents’ permission, they do require birth certificates or passports as proof of nationality; they did not do that here. And I cannot see the police coming as mob-handed as they did in last night’s episode to arrest one person and escort another home, neither of whom were believed to be armed.

For anyone wondering why this was illegal, and not just a matter of in-school discipline, the age of consent when one party is a pupil and the other is a teacher is 18, not 16. This was introduced in the 2000 Sexual Offences Act as a compromise to allow the age of consent for gay males to be reduced to 16; the argument had been that, if such acts were legal at 16, boys that age would be vulnerable to predation by older men. (The same is true in Canada, under legislation introduced in 2008.)

There have been a couple of news stories about this in the past few weeks. The most recent was this week and involved an assistant head-teacher who styled himself the “Salford Stallion”, who was sleeping with two girls without each other knowing, and his behaviour was discovered when one of the girls arrived at his flat to find it “festooned with rose petals, balloons and bondage equipment intended for the other girl”. He also admitted making indecent images of children (by videoing his sexual acts with the girls); the acts took place in his office at the school, in the sports hall, in a pub car park, and on school trips. He was jailed for six years in total. The other was a female teaching assistant named Leah Davies, who got a 12-month suspended sentence and a two-year supervision order for sleeping with a 15-year-old boy who was said to have been a gregarious young man who initiated the act and was certainly not a victim. None of the reports mention that she was told to sign the Sex Offenders’ Register (they do not regarding Christopher Drake either, but his offences were much more serious, as reflected in his jail term; still, news reports normally mention that someone has been required to register).

After an earlier case in which a young female music teacher was jailed for carrying on an affair with a female pupil, aged 15 at the outset, the teacher and author Francis Gilbert wrote an article for the Daily Mail in which he suggested that such behaviour was much more common than might be imagined, giving the example of a man who was given to sexually harassing girl pupils at the school where they both worked, and was suspected of taking pupils home and taking “inappropriate” pictures of them, though this was never proved. The man got away with it because he was foreign, and the school refused to investigate, putting his behaviour down to “cultural differences”. This is, of course, ridiculous: such behaviour is not normal in any culture. He also denounced what he called “the weak, reckless, selfish irresponsible teachers who allow themselves to enter into what they pathetically describe as ‘romantic’ relationships with pupils”, in other words, the real-life Montoyas.

I think we can distinguish between the genuine exploiters and outright sleaze-bags, such as Christopher Drake, and those who have relationships with the pupils out of school time where there is genuine affection on both sides. Quite simply, there is no victim in a lot of these cases besides the angered parent and embarrassed head-teacher. The case of Montoya and Kirby is fiction, but I fail to see why it should merit a prison sentence when she initially resisted, refused to abort the baby, when she could have saved her own skin by crying rape, when she had tried to save face for everyone concerned by leaving suddenly, and when both parties were clearly committed to each other. Perhaps I am reading too much into it; this particular case is, after all, only fiction, but the mitigating factors are so considerable that it should be unthinkable to lock her up. The maximum sentence for assisting a suicide, for example, is 14 years, but almost nobody ever gets it and, where there are extreme circumstances, people get non-custodial sentences or are not prosecuted. And that’s where lives are lost, not gained.

It’s also been asked why female sex offenders are generally treated more leniently than male ones, particularly when the “victim” is male. The simple answer is that a woman is less able to coerce a physically mature teenage boy to have sex, and that the social consequences for him are likely to be less serious — he is more likely to be called a “ladies’ man” or a “Casanova”, while the girl is more likely to be called a slut. Having had more experience with teenage boys than I really cared to, I find it rather amusing that anyone thinks a (healthy and able-bodied) mid-teenage boy is in any need of protection from women. Many (though not all) boys that age would regard such an encounter as a conquest, a “score”. They would not feel violated or used by the experience. They are often at the top of the pile within their school community, and there are likely to be a number of children in the school who are in more need of protection from them than they are from any 20-something woman — and quite possibly aren’t getting it. I certainly didn’t.

There are, of course, circumstances where this type of behaviour simply shouldn’t be tolerated; one is where the teacher was there to counsel a pupil who was in an emotionally vulnerable state, as was the case with one of Drake’s victims. We do not allow doctors to conduct sexual relationships with their patients, even when they are adults, and there is a case to be made for banning any sexual activity between students and teachers on the grounds of academic integrity, such as eliminating the possibility of favouritism and coercion. But this should be a matter of institutional discipline, not criminal law. Sixth formers are at school or college voluntarily and (unless the government decides to raise the school leaving age) can leave any time and get a job, and can come and go as they please from the school or college as long as they attend their lessons, so it makes no sense that their tutors (whose professional relationship with them is much looser, and whose time spent with them is much less, than that of teachers of secondary-age pupils) are expected to treat them as children in that one regard. Tutors are not in the same position of power over a sixth-form student as a correctional or health worker is over an inmate or a patient, and the employers the young people might otherwise work for are not under any of these restrictions, despite having the power to terminate their livelihood.

This does not mean I would expect schools to approve of teachers carrying on with sixth-formers, but neither should we use the full force of the law on what are essentially victimless crimes. Unless there is evidence of coercion, trickery like Drake’s or a history of inappropriate behaviour that is revealed when the scandal comes to light, a first offence of this type should result in nothing more than dismissal for that teacher, and certainly no suggestion of prison or the sex offenders’ register. That ought to be reserved for those who really are a danger to the public, which cannot be said about some of the people involved in these incidents.

I’ve heard some criticisms of this documentary to the effect that, although it shifts the focus away from female converts, it concentrates too heavily on one very extreme group which has a tiny number of followers. There were also a number of inaccurate statements, such as the reference to the stoning of women for adultery, which appears twice in the first ten minutes. In fact, the punishment applies to both sexes (according to most scholars, a pregnant woman can easily escape the charge by claiming she was raped, which would the dominant opinion in this day and age given its prevalence). Leech films during Ramadan, and witnesses Richard sleeping for large parts of the day, opining, “solution to fasting: sleep as much as you can”, as if this is what Muslims in general do. In fact, Muslims in general work, and cannot sleep most of the day.

We did not find out exactly how Richard had been attracted to the Muhajiroun, but we do find him doing his “da’wah” on the streets of east London, accosting a new convert from Latvia and trying to encourage him to get involved with them, but also getting into a fight with a man they believe to be drunk, after he flings one of their leaflets back at them (I could not smell his breath on TV, obviously, so I could not tell whether his slurred speech was due to that or to a disability). It gave a fairly good picture of what the group are like among themselves, which is to say, somewhat jocular and matter-of-fact with what many would consider harsh views. They talk with exaggerated disgust at all the munkar (evil) going on around them as they drive around London looking for somewhere to pray (as has been pointed out elsewhere, that is an easy task in east London). Several of these men, of course, were once part of that scene, in Salahuddeen’s case only a couple of years earlier.

Salahuddeen and Ben/Ahsan both come from Weymouth, which Leech describes as an “ordinary seaside town”. There is no such thing as an ordinary seaside town; there are big and small seaside towns, some are prosperous and youthful, like Brighton; some are faded and run-down, like Hastings, while others are popular with retirees and commuters. I haven’t been to Weymouth since I was a child, but I do know someone who lives there now. One of the group’s stunts was to bring some men down from London, including Salahuddeen and Ahsan, on a “da’wah” trip, which leads to some locals having to be dragged away by the police while others call their message “bollocks” or something similar. All quite likely to make the situation for the few Muslims in Weymouth more difficult.

Towards the end, Robb confronts his brother on his way to Mecca, and asks him some questions about the derogatory way in which the latter spoke to him, such as by claiming that Muslims were supposed to shake hands with non-Muslims with their left hands, as it’s their “dirty” hand (something no Muslim I asked had ever heard of, and nobody else in the group seemed to have done either). Salahuddeen also seemed rather more reasonable and conciliatory when on “enemy territory” in Weymouth, telling people they were entitled to their opinion etc., but was full of bluster when surrounded by his friends in London. Leech is also heartened that Ben/Ahsan seems not to have swallowed everything he was being told in London to quite the extent that Salahuddeen had.

This isn’t a particularly comprehensive documentary on al-Muhajiroun (I’ve heard the book Radical Islam Rising by Quintan Wiktorowicz recommended for that), nor is it representative of the convert experience generally. It does, however, give a fair indication of what sort of people the Muhajiroun are and what they make of people who convert and join them. They did not have to use hidden cameras as were used in other recent documentaries, because this group will clearly do anything for publicity, much as we saw with the Tottenham Ayatollah documentary in the 1990s. Most converts live pretty ordinary lives, and will not want to live with cameras pointing at them (and these were all men, none of them apparently married). None of this is new, of course, for people who have known the Muslim scene in London for the last 20 years or so; the only concern is that converts in general, particularly in provincial areas like Weymouth, will be judged on these men’s example.

My biggest criticism of the programme was that it focussed too heavily on the time when Neil Morrissey himself was in care, that is to say, the mid to late 1970s (with some attention to the early 1980s as well). That was a time when a lot of the old “children’s villages” were still in existence, when whole streets were given over to children’s homes, and when a lot of the worst scandals happened; but it’s not the whole story and some of the same problems highlighted still existed when I had my experience of institutional “care” from 1989 to 1993. The extreme abuse which took place at the “home” where Morrissey’s older brother was incarcerated (as it was a secure unit) had no parallel at my school, but the problem of totally unsuitable staff who clearly did not like children (I’ve long said they appeared to have been recruited down the pub) was obvious. Some boys from another special boarding school, Berrow Wood in Worcestershire, have posted comments on previous entries here, and their stories are much more distressing than most of what went on at my school. (Some of them tried suing the councils that sent them there, but lost their case as the councils were not deemed responsible for what happened to the children in their care at private boarding schools.)

He interviewed a number of people, all roughly the same age as himself, who had been in care homes in Staffordshire at the time; there were two women who had asked to be taken into care because they were always seeing their father beat their mother, to the point where their older brother attacked their father with an axe, but two men who were in the Riverside secure unit told Morrissey some very distressing tales of sexual abuse and isolation (known as “pin down”, in which children were locked in rooms for hours or days on their own).

Towards the end of the programme, he got to meet the social worker whose name had come up time and again in his files, and played a major part in the decision to put the Morrisseys into care in the first place. Neil Morrissey seemed very upset by the fact that he and his brother were taken away from their family and separated for years for what seemed like trivial offences (in particular, repeated petty theft), and said that only “cruel bastards” would do such a thing. His files said that he seemed to have no moral standards, and the family today clearly regarded their thieving as basically nothing. However, the social worker explained that he and his team had tried desperately to try and keep the family together, but could not work with his parents, as they were never able to supervise the children due to their shift work, and neither of them accepted that keeping a clean house was their job, and ultimately, the boys had to be taken away as the environment was damaging to them.

However, Neil Morrissey seems to have been mollified somewhat by his explanation, perhaps because he ended up in a relatively benign home, even though others were being abused in the same street that he lived in. His brother was sent to a place where boys were being raped and shut up alone for days, and whatever mischief they were getting up to at home and whatever danger they were in, they were not sexually assaulting anyone, as far as can be told, or being raped, or suffering other serious cruelty. Perhaps that was not this particular social worker’s own fault, but the question was not even put to him and should have been, in my opinion.

Next week, the programme deals with the situation facing care leavers (part of Neil Morrissey’s own story is in the Society Guardian link above), who face notorious difficulty as their “care” tails off very quickly when they reach adulthood, which is usually not the case for children raised by their own families these days.

This was on last Wednesday on BBC2, and is available on iPlayer until next Wednesday. It examines whether it is worthwhile to resuscitate babies born at 23 weeks, which is the absolute earliest in the pregnancy a baby can be born and have any chance of surviving. Even then, most die and most of the survivors have severe disabilities. Before that, a birth is regarded as a miscarriage. In some countries (like the Netherlands), babies born then are left to die, while in Sweden, survival (and healthy survival) rates are much higher than they are here. The presenter, Adam Wishart, presents his evidence for the programme here. There was also a debate on ITV’s This Morning programme featuring the presenter and two of the people in the programme, and Wishart also wrote a piece for the Daily Mail.

The programme showed two baby girls, one older girl and one young woman who were born very prematurely; of the two baby girls, one survives for only a few days while the other is taken home by her parents a few weeks later. The young girl, Molly (whose parents have been interviewed by the media this past week), is 11, and has mild cerebral palsy and epilepsy, but is otherwise fairly healthy and is presented as the “exception” to the rule that the vast majority survive only with severe disability. The one that was the most interesting to me was the young woman, Heather Rutherford, whose mother is one of the nurses treating premature babies at one of the hospitals, and who herself was born at 26 weeks gestation, then the limit of viability. She has fairly severe cerebral palsy, and has the use of only one limb (her left arm).

(Note: After writing this article I did a little bit more research and found that the impression given by the programme of Heather having a lonely and inactive life isn’t true — she is an active dog breeder and showed several of her pugs at recent dog shows including Crufts, and is currently at an exhibition in Birmingham. Neither this programme, nor the Daily Mail article, nor the ITV discussion mentioned this activity of hers. However, that is the lot of many severely disabled adults in this country, as I mentioned when I wrote about Hilary Lister back in 2009.)

Heather had a relatively happy childhood and acknowledged that she received excellent support during the time she was at school; her A-level results meant she was accepted for a place at a university to study biomedical sciences, but her disability made the lab work and lectures very difficult and she ended up dropping out. This led to a period of deep depression during which she seriously considered suicide. She also says that most of the support she received as a child disappeared entirely when she reached 18, and that she is terrified of the future, in particular of how she will live once her parents are no longer there to look after her. As the programme made clear, she was experiencing a very difficult transition from being a disabled child to being a disabled adult.

As she makes clear in her interview on ITV (the website is not very reliable and you may find that either a blank page appears or that the Flash video of the interview does not play), she is not against keeping premature babies like herself alive, but believes that there is no point unless those born are supported right into adulthood, not just at the point where they can be presented as miracle babies. The programme did not mention it, but this is something that has been in the news a lot lately, and it is a problem that current government plans are likely to make worse and not better. It is also not the first time I’ve seen a programme on premature babies that made exactly this point: that the quality of the later lives of very premature babies may not justify the effort of making sure they survive (one of those interviewed on that programme was a young man with a drastically impaired memory, although he seemed content with his life and, later on, got a girlfriend and found he could remember events with emotion attached to them). It appeared that the female survivors had better chances, particularly as regard cognitive disabilities, than male ones.

It was quite disturbing that money was continually referred to in this programme — the issue of whether keeping the babies alive was worth the money. The same could be said for any person suffering a severe medical crisis and the prospect of lasting severe disability, whether it be a stroke or a car accident. I do not hear anyone saying that these people should be let go, because it’s not worth the money saving someone who is going to be cognitively impaired and/or quadriplegic anyway. While a large proportion will not survive long after a very premature birth, those who survive “with disabilities” will need lasting support, so that a lavishly cared-for child does not grow into a disabled adult enduring a lonely life of enforced idleness.

Picture source: SnugglePug.