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.

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.)

I’ve said this before, and I’ll say it again: I don’t think this programme did the subject justice. Admittedly, there is only so much you can fit into a documentary running to just under 30 minutes, which is the BBC’s fault, not the producers’, but it was a bit short on medical details which might have given the reader a clearer picture as to why Lynn Gilderdale got to the point where she felt she had to take her own life. Some of Lynn’s complications were mentioned, as well as the fact that she was in pain (hence the morphine), but there was no reference to the recurrent medical disasters (such as the incident in 2005 where her lung was punctured and an artery nicked, causing serious internal bleeding and leaving her on life support, during a routine operation to replace a Hickman line, which as Lynn reported herself, was allowed to get that bad because the doctor would not listen when she said she could not breathe properly and was in pain) or to the abusive treatment she had received as an in-patient in 1992, which left her with a lifelong fear of doctors and hospitals. Nor did it mention how ME itself affects people, other than by causing them pain; the complications that were mentioned in Lynn, such as adrenal and ovarian failure, are unusual.

Panorama is meant to be an investigative series, and its strapline reads “the world’s longest running investigative TV show”, but this programme had no investigative content whatsoever, and there was plenty of material there. The programme did not mention that numerous lives had been ruined because doctors were at best encouraging, and at worst forcing, people with aggressive ME to exercise when the hallmark of ME is not persistent fatigue with no other identifiable cause, but the dramatic upsurge of symptoms caused by exertion, which for the less severely affected may mean running up a hill but for the more severely affected, it can simply mean getting up out of bed, travelling, talking or even listening to someone. This was a major factor in Lynn becoming as ill as she became; without it, she may have developed severe ME as her illness seemed unusually aggressive, but perhaps her experience would not have been as dire and protracted as it was. She was not the only victim; the trauma of being sectioned (by doctors who refused to believe she was physically ill) caused Sophia Mirza to suffer a dramatic relapse after her condition had improved, and there have been many other incidents. As Zoe Williams writes:

A common theme is the belief that people with M.E. would get better if they did a little bit more each week. I can’t count the number of times that I have had to explain to a professional that this does not fit my experiences. It can be heart breaking when this is held up as the effective treatment that I would so love it to be. … If I had been encouraged to listen to my body, learning from my experiences, I doubt that I would be as ill as I am. Instead, I was told to do what I knew in my heart was dangerous. It is not merely a case of insensitivity – it is a case of being advised by someone with authority, to do things that predictably make the illness worse. Yet patients expressing concern about possible long-term relapse tend to be treated as if they are over-anxious.

Williams contracted ME in 1990, aged 13; she has been bedridden most of the time since (not as extremely as Lynn Gilderdale, who was unable even to sit up without passing out, but bedridden all the same). She is the main author of the ME TIps collection and a number of articles which were published in British ME magainzes and are collected here.

By contrast, the local ITV Meridian news programme has been quite diligent in following local stories of ME sufferers, including the Gilderdales and Sophia Mirza, whose inquest in 2006 was the first in the UK to state “Chronic Fatigue Syndrome” as the cause of death, after an autopsy found clear evidence of inflammation to her spinal cord. A report broadcast after the end of Kay Gilderdale’s trial revealed that there were almost no ME specialists operating on the NHS in the region and waiting lists of more than a year (one patient actually turned up for his appointment a year early).

The BBC has, to my knowledge, broadcast one programme (a Panorama titled Sick and Tired, in 1999) about the mistreatment of young ME sufferers, and there are limits as to how much they can investigate as a lot of parents whose children are suffering now are afraid to speak out; parents have been threatened with having their children taken into care, but some families have spoken out, such as in this report in the Daily Record last October, in which a teenage girl and her parents described how doctors forced her to exercise until she literally dropped, but there are some who are willing to speak out. No attempt was made to investigate any of this in “I Helped My Daughter Die”; it focussed entirely on Lynn Gilderdale’s suicide and Kay’s role in it, with a cursory examination of the arguments for and against legalising assisted suicide, with a very clear bias in favour on the part of the presenter, Jeremy Vine (much to the distress of certain sections of the disability community).

For whatever reason, the media does not seem interested in ME even in the face of a high-profile story about someone who suffered terribly with it for years. Kay Gilderdale gave two interviews during last year’s ME Awareness Week, and both focussed on the suicide. There is a public health scandal here which is not being investigated; people like Zoe Williams and others who have been ill for years are still suffering, people are still receiving damaging wrong advice, very little research is being done and most of that is on groups of patients identified by “fatigue” who almost certainly do not all have ME. This programme was one big missed opportunity from start to finish, and it is a mystery why it got an award for medical journalism when its medical content was pretty thin. Then again, British documentaries rarely do serious investigations anymore, as TV executives think that people don’t really want to think when they watch prime-time TV after work, so Panorama is reduced to stirring people’s emotions instead.

The Centre for Policy Studies (which is, as I understand it, a traditionally Tory-aligned think tank) has published a report by Cristina Odone putting the case against legalising assisted suicide and euthanasia, mostly on grounds that it would put elderly and disabled people in a very vulnerable position at a time when economic difficulties are leading to care budgets being cut drastically and we have an ageing population. Odone is a former editor of the Catholic Herald (1991-95) and former deputy editor of the New Statesman (1998-2004), has published two previous reports for the CPS and is the brother of Lorenzo Odone, the severely disabled boy who featured in the film, Lorenzo’s Oil (1992). Two of my friends (who have M.E., the same illness as Lynn Gilderdale who is mentioned often in this report) agreed that “religion should be left out of the euthanasia debate”, and this report does not argue on the basis of faith but of the possible consequences. The full report (as a PDF) can be found here.

One of the two friends said she couldn’t read the full report, so I’ll give a summary of it here:

• Legalisation of euthanasia would lead to pressure for it, particularly on elderly people whose care needs are a burden on relatives (or the state), and reduce their legacy. In the words of Baroness (Mary) Warnock: “Pensioners in mental decline are ‘wasting people’s lives’ because of the care they require and should be allowed to opt for euthanasia even if they are not in pain” (p.17 of PDF). Elderly people may feel morally obliged to choose euthanasia because they are a “waste of money”, requiring expensive care when that money could be used to fund a grandchild’s education, for example.
• In the Netherlands, where euthanasia has been legal since 2001, a private organisation has issued an opt-out card to prohibit any medical action intended to end their life, such is the fear of involuntary euthanasia. Campaigners there have sought to have it legalised for anybody over 70 with an “end-of-life pill” available at all pharmacies. In Oregon, euthanasia has been offered to people with treatable diseases because the ill people lack health insurance and euthanasia is much cheaper than the treatment they require.
• In light of Starmer’s recommendations on prosecution for assisting suicide, “the present law provides safeguards for the vulnerable and compassion for those who, in extremis and moved by the purest motives, help someone whose suffering has become unbearable carry out a settled wish to die.”
• Countries where euthanasia is already legal have drastically inferior standards of palliative care to the UK’s — none in the case of Oregon in the USA and the Netherlands, and very primitive in the case of Belgium. Physicians in Oregon are surprised that euthanasia is being considered in the UK, for this reason. Britain has been a pioneer in palliative care, spending £1.4m on hospice care daily, and the field has been a recognised clinical specialism since the 1980s. Death is usually not as horrific as people expect, with the right care, and stories about terrible endings from certain diseases (e.g. motor neurone disease) often refer to rare, extreme cases.
• Most doctors (two thirds) oppose legalised euthanasia, and it is likely that patients will become suspicious of any doctor who has been associated with it. In many cases, those with life-threatening illnesses also have depression which is treatable. Someone worn down by a debilitating illness (and troubled by symptoms like incontinence) may become more susceptible to “hints” that their not being there might perhaps be better for everyone.
• If Terry Pratchett’s idea of a tribunal consisting of “wise”, “upstanding” over-45s to regulate euthanasia comes into effect, it would consist of members of the educated élite making judgements on behalf of socially marginalised people, yet if conditions such as depression could go unnoticed by doctors, it is more unlikely to go unnoticed by a group of untrained “wise” people.
• Even when people make living wills (advance decisions) dictating that they would want to die in a given situation, when the situation arises, they may actually change their mind, as happened to Richard Rudd in Cambridge, who was paralysed in a motorbike accident having issued such a decision, but indicated (using only eye blinks) that he wanted to live when it actually happened.
• There is a chapter on recommendations titled “Towards a Dignified Death”, in which she recommends equipping care homes to deal with sick and dying residents rather than rushing them to hospital, improving access to respite care, and letting people know about the possibility of Advanced Care Planning (ACP), “in which health professionals discuss with patients how best to plan for their end-of-life care (including the individual’s concerns and their understanding about their illness and prognosis)”.

The point about how dangerous it is to discuss euthanasia and assisted suicide at a time when the economy is collapsing, and the likely result is a drastic reduction in care spending (despite pre-election promises of a National Care Service) which would put respite care beyond the reach of the average carer (one example given in this article from the Guardian yesterday) and exacerbate the sense of burden on both sides, and reduce the availability of suitable long-term care and the likelihood that a vulnerable, sick person might be able to find care that they would want to accept, which might be at home or in a care home of some kind (it is assumed that they would want to live at home, but some might not want to if their family situation is not suitable). The name of Lynn Gilderdale is mentioned in this report, and one factor that was mentioned in press reports of her mother’s trial was Lynn’s fear of having to move into a nursing home, having suffered terrible abuse in one hospital and poor care in several others.

It is unlikely that, by 2008, the availability of decent nursing care in the absence of her mother would have made any difference to Lynn’s decision (there is, actually, a fine hospital called Burrswood near to where Lynn lived which has a good reputation for caring for severe M.E. patients). The issue should be how people are prevented from getting to the point where Lynn was in 2007-8, which was not only that she had one of the worst ever cases of one of the most debilitating and painful illnesses known to mankind, but also that she had suffered one traumatic experience at the hands of doctors and nurses after another and, judging by some of the comments she posted on various LiveJournal forums and blogs, remembered them all too vividly and had little to distract her from both those and her intense pain, sickness and other symptoms. However, the fact that she had all this to contend with was because doctors refused to believe that her illness was real and that her symptoms were real, or that she really couldn’t breathe when she said she couldn’t (because they’d messed up her Hickman line replacement and filled her lungs with blood, as it happens), and the abusive treatment she received in hospital initially may well have contributed to her illness becoming as severe as it was, and remaining that dire for so long (one thinks of three women in particular that are well-known to the M.E. community who went down with severe M.E. around the same time as Lynn, and although they are all still severely affected, none of them have symptoms as extreme and exist in circumstances as restricted as Lynn’s).

In short, we might have fewer sick people considering this course of action if medical staff treated patients better and could expect to be brought to book for abusive or dismissive treatment of their patients. However, we must also make sure that the sick and severely disabled are not simply left alone in their pain. I remember reading of Hilary Lister, now best known for sailing solo round Britain in a breath-controlled boat but, until 2003 (when, incidentally, she was the same age as Lynn Gilderdale was in 2008), spent most of her time sitting on the sofa, unable to move and in severe pain, and seriously considering euthanasia. If it had not been for the suggestion of going to a nearby disabled sailing club (something which would not have helped Lynn Gilderdale), we might now mention Clifford Lister, her husband, in the same breath as Kay Gilderdale, and it raises the question of why someone in her position would simply be left home alone for most of each day. It has been reported that some of the quadriplegics who have committed suicide (sometimes by starvation) or had their ventilators turned off over the years have done so because of having to sit around in a “home” (or even their own home) all day, every day instead of having something to do besides think of their pain, or distressing symptoms, or what they have lost. This needs people, and money.

Odone titles chapter 2 of the report “Death as a Consumer Choice”, and includes several of the best known cases of assisted suicide over the years: Douglas Sinclair (whose friends were arrested for taking him to Switzerland), Daniel James, Lynn Gilderdale, and Edward Downes and his wife Joan. I don’t believe for a minute that it’s always regarded as such by those who consider or enter into assisted suicide; it’s often a decision that is agonised over, as was clearly the case for Lynn and Kay Gilderdale. On the other hand, there are those with degenerative conditions like MS and motor neurone disease who seem to have had their fingers on the “quit buttons” almost from the first signs of trouble, as one can see from the interviews with Debbie Purdy and Chris Woodhead in the Panorama programme featuring Kay Gilderdale that was broadcast by the BBC this past February. Worse, when the courts found in her favour, she was filmed celebrating, splashing open bottles of champagne, something I found chilling. It reminded me of something I’d read about a pro-abortion protest in Australia many years ago:

Many professional looking and smartly dressed women stood on the smooth grass. They cheered together for speakers who said abortion was just a women’s health issue, entirely up to a woman and her doctor, needed to prevent backyard jobs, something that politicians should not have any role in. “Who has any right to tell a woman what to do?”

A pro-life friend watched the protest whilst sitting on the grass under the oaks. She told me that the protesters cheered over one woman’s abortion story. This woman had a child, then two abortions, and then another child. The sound of women cheering over abortion horrified me. It is one thing to believe abortion should be a choice available for women in difficult circumstances. It is another to cheer about it.

The case of Daniel James, who had a C6/7 spinal cord injury, besides being a good example of someone with a possibly treatable depression, was an example of someone who was just coming to terms with a permanent disability was helped on his way, rather than helped to come to terms with his situation, by misguided loved ones. People may well not want to carry on when reaching a critical juncture in their lives (18 months to two years is the point at which one’s level of function after a spinal cord injury stops improving), but may change their minds some time afterwards. The same may be true of someone living with a long-term sickness or disability who suffers an emotional upset, which may or may not be related to their condition but which, at least for a time, radically changes their view on life and whether it is worth continuing, which they may reconsider a few weeks or months down the line.

Objections by religious people to legalising euthanasia or assisted suicide are often dismissed, both by the “chattering classes” derided in this report, and sometimes by advocates for some severely ill people, as the last stand of heartless fanatics and zealots. There are very compelling reasons to resist the drive towards legitimising euthanasia, given that the “next step” as shown in some places is legalising it for people much less infirm than those who, it is thought, might want to avail themselves of it now. I have even seen a letter in the Times from an old lady who stated that she was quite happy in her current abode, a nursing home, and had no wish to die, but if euthanasia were legal, she would consider herself obliged to take it up as her 19 descendents need the legacy currently being used to pay the nursing home bills. It should be remembered that in this country, we have not jailed people for assisting the suicides of very ill people who are unable to do it themselves for a long time, as long as it was actually suicide — people were getting probation in the 1980s, today they are often not prosecuted at all — so it is not as if our laws on the subject are draconian. We should not let a minority of emotionally resonant cases blind us to the possible consequences of opening up the doors any further.

If you’re in the UK, you can hear the show here; it starts about 40 minutes in.

The appearance was announced by Vine as one by a mother who had helped her sick daughter to die. Indeed, this aspect of Lynn and Kay’s story was the first thing that was discussed in the interview, and the fact that it was ME Awareness Week, the whole reason she was on there, was not mentioned until about 7 minutes into the piece, and even then it was Kay, not Jeremy Vine, who mentioned it. The details of Lynn’s illness were only mentioned after the suicide (and at a certain point, Kay declined to go into any more details about it) and Kay’s own trial were raked over all over again. No mention was made of anybody else with severe ME, despite the fact that Lynn was in contact with them from 2004 onwards, and spent much of her time (when she was not having her cares done by Kay, or sleeping or just lying there in pain) writing about her situation or “talking” to others over the Internet (most of them severely ill, some with ME but some with other illnesses including muscular dystrophy) and giving whatever support she could to them.

It’s ME Awareness Week. Did Jeremy Vine not do any research about this? If so, he might have found out that a book for severe ME sufferers, written by a severe ME sufferer named Emily Collingridge, was published last month (more here, and a longer interview with the author here). He might also have found out that Emily Collingridge had a dramatic relapse in the past couple of weeks. She has been ill since she was six years old, in 1987. As with Lynn, it seems that her health was dealt a significant blow by being admitted to hospital (as I discovered by talking to one of Lynn’s friends, the worst escalations in her illness took place in hospital, and she suffered dreadful abuse there also). Others are still suffering, and how people suffer when they have ME, other than from physical pain, was not mentioned (Lynn’s particular complications were mentioned, but other aspects of severe ME, such as intolerance of light and sound to the extent that one has to cover one’s eyes and ears and have no company for extended periods, weren’t).

It’s ME Awareness Week, not assisted dying awareness week. People with many diseases take their own lives, and that aspect of Lynn’s story could have resulted from a whole range of illnesses, such as cancer or multiple sclerosis or motor neurone disease. There is a whole story which is not being investigated, which is how and why Lynn got so ill in the first place. That it started from her BCG vaccination was mentioned (and Kay did say that it was not due to the vaccination itself but to Lynn’s immune reaction to it, and that there is a genetic aspect to this) and that it got worse as she got infection after infection were mentioned, but the abuse that she suffered in hospital in 1992 (including a sexual assault) was entirely left out. Others besides Lynn have had their condition worsened by bad medical advice and inappropriate exercise “therapy”, or failure to diagnose until someone has run themselves into the ground (or been run into the ground) as a result of ignorance. The essential reason was a culture of disbelief on both sides of the Atlantic; psychiatrists in the UK who insisted that ME was simply a psychological problem, and government health officials in the USA who dismissed it as hypochondria among the wealthy classes.

And while I’m sure many people are uncomfortable about what Kay Gilderdale did that night, I have no doubt that it was the most traumatic thirty hours of her life. The emotion in her voice was unmistakeable. I don’t understand why Jeremy Vine had to get her to rake over it yet again, when she did that for him when making that Panorama programme, other than to raise the “drama” element of Kay’s appearance. Vine is a sensationalist, someone who wants his “news” stories to be full of drama, and is short on investigation which is what any story involving ME requires (his Panorama didn’t have any either, and his 30-minute format cannot do any complex story justice and that was certainly the case with that one). The previous half-hour of that programme, for example, had been full of Vine barking at various politicians, demanding that they accept that Labour “lost” and the Tories “won”, when the reality was not that simple as the Tories only actually got 36% of the popular vote and much less than a majority of the seats in Parliament. There is a long record of him doing this; a few years ago, when the then Home Secretary, John Reid, had been heckled by a member of al-Muhajiroun in east London, he set up Saira Khan (a very secular “moderate” Muslim who had been on “The Apprentice”) with Anjum Choudhary, clearly intending to see the sparks fly and, sure enough, it ended up with Choudhary issuing personal insults against Khan.

I don’t know if Kay Gilderdale knew what Vine would expect to talk about before she appeared. I am not convinced that it would make things any different, because she was only on the show because it’s ME Awareness Week. After all, the discussion after the end of the trial promptly got diverted from talking about ME to talking about assisted dying, to the extent that the BBC was accused of issuing a barrage of pro-euthanasia propaganda. A feature on a woman severely affected by ME for seventeen years and the mother who cared for her all that time during ME Awareness Week shouldn’t be focussed on the last day and a bit of her life. It should tell as much as it could of her story, otherwise it’s a wasted opportunity.

They could have got in a bit more if Kay had started at 12:30 rather than 12:40 — as it had to be cut short to allow “Here Comes the Sun” by the Beatles to be played just before the news. It seemed a strange and incongruously jolly tune, and it wasn’t indicated that it was Kay’s choice, but it certainly doesn’t seem well-matched with a story about a woman who had to live in the dark for most of her life. This is not just a problem with Jeremy Vine — I always wonder why Robert Elms’s interviews with musicians on BBC London don’t take up the full half-hour, with the guest being allowed to play two songs rather than just one and pick any other records played, so it’s their half-hour. But it’s not usually as blatantly inappropriate as that song after that feature — surely they could have found a record more fitting than that.

By the way, it’s ME Awareness Week. Look out for a piece in the G2 part of the Guardian probably tomorrow or Thursday which was postponed last week, even if you don’t have time to wait on an uncertain appearance from Kay Gilderdale on tomorrow’s GMTV. Apart from the Mail on Sunday article, I’m not sure what else is in the rest of the week’s papers; a Google news search returns a couple of articles from local papers ([1], [2]) but that’s it. I don’t expect Jeremy Vine to be bothering with it for at least another year (I hope).

I rang up and talked about how it was part of a big tendency towards nasty comedy which made light of serious subjects like rape, and mentioned the incident in which Ricky Gervais caricatured ME sufferers as being people too lazy to go to work. I wasn’t allowed to mention his name on air (although I told the researchers who it was), but who it was isn’t really the issue anyway, just the fact that people think a devastating disease is some kind of joke.

You can hear the whole thing here if you’re in the UK. The feature on Frankie Boyle starts at the two-hour mark. My bit starts half an hour later. There was discussion on comedians who make anti-gay jokes and of the guy from Seinfeld who delivered the N-word rant on stage after being heckled.

OK, here’s the transcript of my bit.

JG: Right, let’s go to Matthew in New Malden. Hello, Matthew.

Me: Good morning.

JG: Right, yeah, go on.

Me: Right, this thing Frankie Boyle came out with is part of a whole tendency towards this kind of offensive comedy, and there’s this “lighten up” tendency, where people will tell shockingly offensive jokes about serious subjects, rape being one of the more common ones nowadays, and, you know, “it’s just a joke”, “lighten up”, “we’re just having a laugh”, and the problem with making jokes about people with mental impairments is that these people get harassed in the street all the time, and virtually ev — and there’s been surveys done on this subject, and virtually everyone has said in response to these surveys, “yes, this type of harassment, particularly from kids, is a daily feature of our lives, and there was an interview done with people who ran a sort of drop-in centre, and the drop-in centre’s open at [i.e. until] five, but all the people who use it leave at about three so they can get home before the kids get on the bus; they don’t have to share the bus with the kids, because the kids will harass them.

JG: Mm.

Me: And when comedians make money out of this kind of thing, and it’s not that new — there was apparently a time in the 1980s when people like Ben Elton could make a career out of humour that wasn’t offensive, but since about the 1990s in particular, a lot of comedy has been about terribly offensive subjects, and the response when you complain is, “oh, lighten up, get yourself a sense of humour”. But, like, you know, rape isn’t funny.

JG: But Matthew, do you see, what I’m dying to find out; what upset me is, I don’t know this Frankie Boyle guy, but it really upset me to think that people are paying to go and see him. I work for the BBC; Mel has already come in and said to me, “Jo, I don’t think ‘Down’s Syndrome’ is the phrase, I think it’s ‘people with Down’s’; now, my gut reaction is, does that matter, you know, people know what I’m talking about, and he went, “no, some people could be offended”. So here at the BBC, we have that amount of tact and decency, right …

Me: You can get really tripped up on terminology …

JG: Oh God, totally tripped up, I have to— and I don’t want to offend anyone, cos I am fascinated by this subject. But I have to be so careful about so many things, so many things. You know, swearing is one, and apologising is another, all this sort of thing. So, there’s this, there’s Ofcom, there’s all these people monitoring what all of us lot are coming out with. There are all these diversity groups going into schools saying “we’ve all got to embrace each other, we’ve all got to live together, it’s a melting pot”, blah blah blah. So, this is what we are trying to come to terms with, but what I’m asking is, basically, if we were left without the moral police around, would we all take the Mickey out of each other, because left to pay for a comic, we will go an pay for a man who is cruel, whether it’s to Down’s Syndrome (sic), or to people of certain races, or swimmers (a reference to another, personally offensive, Boyle gag); is that the norm? Is the norm the fact that we love to ridicule each other?

Me: Partly, that might be true, but someone might go and see a comedian they hadn’t expected to be too offensive and then find that he makes a really ignorant joke about a serious subject …

JG: But surely, Frankie Boyle, from what I understand that is his image. Wasn’t he taken off Mock the Week, or something, because he overstepped the mark …

Me: I don’t know about Frankie Boyle. But the particular incident I know about is a — do you mind if I name him?

JG: Uh, hang on. Mel? No, probably not, no.

Me: Well, I mentioned him to your researcher, but it’s a fairly well-known comedian, he’s done a particular TV series and then some kids’ books and then a stand-up show, and he did this routine in which he mocked people with the illness ME, and he did this routine in which he said he’d had someone collecting for ME, and he said, “oh, not MS, the crippling wasting disease, ME; that’s the one where, ‘don’t feel like going to work today’”, and he did this routine where someone was basically ringing up and pulling a sickie, and I think he compared it to people in third-world countries who are supposedly too ill or too tired to go to the well.

And the thing is, ME is a terrible, debilitating illness …

JG: Course it is, yeah …

Me: And you remember the case, the trial earlier this year with the mother who’d nursed her daughter [Kay and Lynn Gilderdale, respectively] for, like, seventeen years …

JG: And took her life in the end …

Me: Well, she took her own life, with a bit of help from her mother, but this young lady had had to live for sixteen years in a dark room — and she’d been brutalised, this is another aspect that wasn’t widely reported on; that lady had been brutalised again and again by doctors who variously mistreated her because, basically, a lot of doctors didn’t believe that the condition existed. But also, she’d had rather brutal treatment, including a sexual assault. And this lady had had to deal with all this alone, in a dark room, in more-or-less silence, in pain, for years and years and years, and that is what ME does to people.

JG: Mm.

Me: And it’s not funny, it’s not “yuppie flu”, but this chap was making jokes about it like it was something trivial.

JG: And were people laughing?

Me: As far as I could tell, yes.

JG: Because what is shocking me is, as much as the performer, is the audience. Because I …

Me: People will laugh at these things, sometimes it’s ignorance. People often don’t know ME … when I mentioned the case of Lynn Gilderdale to people at the dinner table, they said, “don’t you mean MS” …

JG: Yes, aah …

Me: People didn’t realise this condition was so debilitating, but when it comes to mentally impaired people, they will laugh at jokes about it, because they think, most people … if I used the word “retarded” to people in my family — we have two teachers in my family — I’ll be told off about it …

JG: Yes, yes, of course …

Me: But people will use that, you know, people will just make jokes about mentally impaired people, and it’s good that there’s an outcry, because it leads to people getting attacked in the street, that’s where it leads.

JG: Yes, of course …

Me: If people think rape is funny, you know, it’s not going to lead to women getting pounced on in the street, because there’s a certain type of man that does that, but it’ll lead, for example, if people think it’s funny, the sort of rape that goes on at parties and that sort of thing, when people are drunk and …

JG: Matthew, I totally, I absolutely understand, thank you very much for your call. Thank you for that. I totally understand where you’re coming from. What really, really upsets me is that we have the moral police, which gets in the way of my job an awful lot, because I think they’re pedantic, and in life an awful lot, but without them, and if we were left to our own natural reactions, would we all be laughing at each other’s shortfallings? Because you know, this guy is sold out wherever he goes. Now, it’s not like, you go and see an act, like Mike in the USA said, he emailed me saying that often, you go and see an act and they will go off on a tangent and you think, mate, “don’t go there, it’s not funny, you’ve made a mistake” and usually, you can see in their recovery that they’ve gone wrong. This guy Frank Boyle, from what I’ve heard on the radio this afternoon, what I’ve read about him in the papers, that’s his style, he’s cruel. So do you think we basically like cruel humour, and if we were allowed, you know, that’s what we would …

I always thought of Hyde Park Corner [actually Speakers’ Corner which is at Marble Arch, not Hyde Park Corner], right, freedom of speech, that is the greatest example of freedom of speech, but you can’t stand on your soap-box and make racist comments, because there are the police all the way around, you know, they are watching. So, how can a guy stand up in a comedy store, in a huge auditorium, a huge theatre, and I think it was 2,000 he was playing to, and walk away from making jokes like that? Is there ever a way of allowing that sort of humour? By him coming out with those kinds of gags, does it dispel the myths about people with disabilities? I don’t know. I want to know what you think.

I had heard of the Angola Three before today, but this article puts the whole case into very clear detail for anyone else not familiar (and I wasn’t). Two African American men, Herman Wallace and Albert Woodfox, have been held in solitary confinement at the Closed Cell Restricted (CCR) block at Angola prison in Louisiana since 1973. The author, Erwin James, is a convicted murderer and spent his first year in prison in a high-security part of a prison where the cell doors were opened only for “slopping out” (of the toilet buckets that were in common use in British prisons at that time) and meals and, sometimes, half an hour’s exercise:

The cells were 10ft x 5ft, with a chair, a table and a bed. You could walk up and down, run on the spot, stand still, or do push-ups and sit-ups – but sooner or later you had to just stop, and think.

As the days, weeks and months blur into one, without realising it you start to live completely inside your head. You dream about the past, in vivid detail – and fantasise about the future, for fantasies are all you have. You panic but it’s no good “getting on the bell” – unless you’re dying – and, even then, don’t hope for a speedy response. I had a lot to think about. When the man in the cell above mine hanged himself I thought about that, a lot. I still do. You look at the bars on the high window and think how easy it would be to be free of all the thinking.

Such thoughts must have crossed the minds of Wallace and Woodfox more than once during their isolation. They are fed through the barred gates of their 9ft x 6ft cells and allowed only one hour of exercise every other day alone in a small caged yard. Their capacity for psychological endurance alone is noteworthy.

Back in 2007, I blogged an article about juveniles facing life without parole in American prisons (Life Without Hope). The most disturbing case involved Nicole Dupure, who was jailed for supposedly helping her boyfriend murder her aunt. She claimed that she was in a nearby diner when the deed was done, but was convicted mainly on the word of her boyfriend, who testified against her (after first saying she was involved, then saying he did it alone) in return for a second-degree murder conviction and a fixed maximum sentence (albeit of twenty to fifth years). While some of those featured were unquestionably guilty, some were involved only peripherally in group enterprises but were convicted of “felony murder”, which carries a mandatory sentence of life without parole and applies even to participants who were not there at the time of the killing or who did not know that there was a lethal weapon involved. So, there are old men in American prisons serving whole-life sentences for acting as lookouts at the age of 14 or 15.

More recently, I came across the case of Efren Paredes, a Latino schoolboy who was convicted in March 1989 for the murder of a shopkeeper in a robbery in Benton Harbor, Michigan. A number of others who definitely were involved, and who gave information or testimony against him, were not prosecuted or have since been released; he is serving life without parole. Again, a dubious conviction based on information from people with something to gain. There is a well-known problem of such “snitch” evidence in US courts, and it is a mystery that the law allows evidence from people of obvious ill character with something to gain from their testimony to be presented in court. Clearly it’s a case of prosecutors wanting to notch up convictions as it makes them look more efficient, even if the convictions are subsequently overturned. Paredes has now spent more than half his life in jail.

These facts always strike a huge chord with me: that a person who is, or might be, innocent has spent most of their life, or more than my whole life, in prison. Perhaps that’s why I’ve been unable to get Lynn Gilderdale out of my head for the past six weeks and why she’s been turning up time and again on this site. Fifteen or twenty years may not seem like a long time to someone who is middle-aged, but to a teenager it’s more than their whole lifetime so far, or longer than as much of their lives as they can remember; it’s a hardly conceivable time frame. I think back to the time just after I left boarding school, riding up into the hills to college, discovering new music I liked and eyeing up girls (though in the event, I never actually had a girlfriend) and then remember that both Lynn and Efren were spending much or all of their time confined to small rooms, Efren was trapped in a building pretty much devoid of female company except for the occasional visit, and Lynn, who had not been to school since the second day of her illness in late 1991, could not tolerate the music (even if Tori Amos, Richard Thompson and the Indigo Girls had been to her taste), and that much the same state of affairs persisted for 14 years afterwards for Lynn and to this day for Efren.

Nowadays, prison sentences that long are presented as if they were mere slaps on the wrist and we hear demands for mandatory jail sentences of several years for merely carrying a weapon. There are organisations fighting to get people off Death Row and to get rid of the death penalty in the USA generally, but the issue of innocent people serving life sentences when they are innocent does not have quite the same urgency, for obvious reasons. While I do accept that people sometimes have to be confined for long periods, sometimes their whole life, it is clear that hysteria, prejudice and a vested interest in getting heads on plates leads to a lot of innocent people, particularly but not just men, ending up spending their entire youth in prison. It’s not just tragic; it’s heinous.

Admittedly, I saw this video after I read in January all about Lynn Gilderdale’s dreadful struggle with the condition he is talking about (Myalgic Encephalomyelitis or ME, otherwise mistakenly called Chronic Fatigue Syndrome or CFS), but even before that, I did know that ME wasn’t a trivial illness that made you “tired all the time”, but something that at worst caused people to become paralysed, mute and bedbound in the space of a few months (in its more moderate forms, it causes people to have extremely low physical energy, impaired concentration and pain). You can read an account of a typical day by another severely affected sufferer, Jodi Bassett, here; she also has a website.

Organica told me that Ricky Gervais was an atheist; I replied that this was his business, and that what I objected to was him making cheap jokes at the expense of seriously ill people (this was her reply). He called Multiple Sclerosis a “crippling wasting disease” while trivialising ME as “the one where … ‘don’t feel like going to work today’”. If he could have been bothered to use the same computer he wrote his spiel on to find out some basic facts about what he was talking about, he would have found out that not only did ME have much in common with MS, but that, particularly for severe sufferers, it is far more debilitating on a day-to-day level than MS except at the final stages of degenerative MS, or the final stages of a number of other fatal illnesses. On top of this, MS is recognised as a real, neurological illness (or at least it is now) and sufferers are likely to receive sympathy and good care; ME is officially recognised but is the subject of medical turf wars and patients are highly likely to experience professional disbelief, counter-therapeutic medical treatment, downright abuse and prejudice.

Years ago, I told someone that I didn’t find Woody Allen all that funny and she asked me if that was because he was Jewish (this was after I became Muslim), something I didn’t know about him at the time. I just found that Woody Allen’s jokes went over my head. Honestly, I’ve found Jackie Mason funny and he is much more extreme. As long as he sticks to jokes about Jewish mamas in New York and doesn’t make racist jokes about Palestinians. I wouldn’t pay money to see him, but the fact that he’s an extremist Zionist doesn’t mean that some of his jokes are not funny. The same cannot be said for jokes which trivialise a seriously debilitating and distressing illness. Someone posted in the comments to that video above that Gervais has since apologised, but he should have checked his facts beforehand and he wouldn’t have looked like an ignorant, offensive jerk.

I don’t know if this is on the material that Organica bought recently (and I don’t intend any of this as an attack on her, by the way). The show went out in 2007 and some bloggers objected at the time, and Gervais responded to some of them personally. Gervais’s response was to compare “complaints” about ME to third-world situations where people are starving and, supposedly, where nobody complains about ME. It’s a common stereotype that you don’t get ME on council estates or in third-world countries, but it is simply not true. In any case, if you’re in a third-world country and you can’t swallow and need tube-feeding and can’t get access to it, you probably won’t be around for long enough to “complain” about it. Around the same time, he also managed to get a joke about killing prostitutes into his routine; this was shortly after the time of the Steve Wright murders in Ipswich.

Do people really think about whether the comedy they watch is really funny? I’m sure Ricky Gervais wouldn’t make the same ME jokes now that someone in the audience could call out “hey, what about that Gilderdale woman?”, but over the last few years there has been an increase in “comedy” about highly offensive subjects, which include racist and variously misogynistic material; I commented on this with some of my own experience here. Last October there was a huge stink about a comedian called Jimmy Carr making a joke, probably sourced from soldiers at a military rehabilitation centre, about limbless soldiers making for a great Paralympic team in 2012, but the same man fills his routine with jokes about rape (they give two examples and they are both pretty unpleasant), without any of the same uproar; note that the Daily Mail article didn’t mention this fact, referring only to his “deadpan style and crude material”. The observation that many men are somehow indifferent to rape and see women as sexual objects is increasingly common nowadays (see Natasha Walter’s recent book, Living Dolls, for the porn-obsessed culture which feeds into this); Kira Cochrane noted that the serial murderer and rapist, Levi Bellfield, was fairly open about his misogyny, and his history and those of two other murderers convicted the same week “paint a picture of a society in which misogyny is taken as a given, in which someone can crow to his friends, without fear of redress or chastisement, as Bellfield did, that he had shaved himself from top to toe to ensure he didn’t leave any DNA behind at a crime scene”. (Bellfield is suspected of being the murderer of Amanda “Milly” Dowler, who was abducted in Walton on Thames and murdered in March 2002.) While these cases may be extreme, and certainly not all men would fail to bat an eyelid when one of their friends bragged about such deeds to them, the fact that careers can be made on the back of such extremely hurtful material is disturbing to say the least. What’s so funny about a man harming a woman for its own sake? Why would anyone want to do that anyway?

As for Ricky Gervais, his stand-up routine included the line that “one false move and I’m Jim Davidson”, one of the “old-school” offensive comedians. The fact that Gervais’s crass ME jokes are out there and people will, no doubt, still be laughing at them reflects on how much ignorance there is about the condition. I was recently in contact with two women who had been friends online with Lynn Gilderdale, or Jessie as they called her, and one of them told me that “Lynn always wanted to raise as much awareness of M.E. as she possibly could; it was very important to her”. This lady was perturbed by the fact that, in the time since the end of Lynn’s mother’s trial, the debate had been all about assisted dying and not about the condition itself and what needs to be done for people who suffer from it. Although the media was largely sympathetic to Kay Gilderdale, there was a fair amount of nonsense in there as well, including Esther Rantzen promoting the so-called Lightning Process, supposedly a cure for pretty much every illness under the sun (it has been called the “Lightening Process”, after its effect on the client’s wallet), and there was also the grave-dancing of “Dr Crippen”, an anonymous GP fond of slagging off his patients, in the Guardian. One would like to think that, following the publicity of the appalling stories of Lynn and of Sophia Mirza back in 2006, someone who fell ill today would not suffer the same abysmal fate, but given the sneering scepticism and the ongoing problem of lack of funding for care of ME patients, along with the perception in some places that it’s all a big joke, one can’t really have such confidence.

For my overseas readers who don’t know who this Gilderdale person is, Kay Gilderdale is the mother of Lynn Gilderdale, who suffered from myalgic encephalomyelitis (ME) for seventeen years, starting from the age of 14, believed to have been triggered by the BCG vaccination (against TB) or a reaction to it. She immediately felt unwell, was unable to go to school from two days after, and her health declined until, a few months afterwards, she was almost completely paralysed, bedridden, mentally confused and unable to remember things, and unable to speak or swallow. While she regained partial use of her arms and her mental faculties were somewhat restored in the years that followed, she remained bedridden and her other limitations remained. She was also in severe pain (controlled by morphine), unable to sit up as she would pass out, continually nauseous, and unable to tolerate light, sound or even a person’s company for more than a few minutes per day. She thus spent most of her days between the ages of 14 and 31 alone, in the dark, in pain.

I didn’t watch Pratchett’s lecture, but I did watch the Panorama as I wrote in an earlier entry. I thought it was somewhat sentimental and that there was not enough investigation; the question of why people like Lynn had been able to get that ill in the first place, hardly registered, but I also believed that the sympathy for the Gilderdales was genuine and was not simply a matter of people thinking Lynn’s life wasn’t worth saving because she was “disabled”. While the ME community and Lynn’s friends were all sad that she had died, they all supported Kay and none of them believed she should have gone to prison or even be put on trial. The sentence she got was consistent with sentences for assisted suicides in these circumstances over the past 20 years or so (not all have even been brought to trial); perhaps Kay would have been much more reluctant to do so had she anticipated a stiffer sentence, and perhaps if she had been able to say “I could get ten years for this”, her daughter would not have expected her to help.

Lewis responded:

Again, it shows that the state regards the lives of disabled and non disabled as being of different value. Oh and apparently the ME community agrees. Sadly, but, unsurprisingly, we’re seeing a split here between people focussed on their impairments / own navels and people focussed on activism / social model / the world and how we form a part of it or not and equality. Shameful but unsurprising.

She also said that she had had mutual friends with Lynn and that she had been contacted by some of them who were “shocked and disgusted at the state, the public and ME community’s response”. However, the ME community are not known to have had a position on euthanasia before now; their position was one of solidarity with one family who had been part of their community for years and which they knew was in a very extreme situation and had been for years. The state’s and health service’s failure to provide Lynn with the medical and social care she needed, leaving Kay to act as almost sole carer for 16 years, is not in dispute. By all accounts (including Lynn’s own), her parents had tried everything to dissuade her from wanting to die, to no avail. Perhaps her friends online tried to do the same; I don’t know. We do know that nobody, except Lynn, wanted Lynn to die and if Kay’s version of events is to be believed, she tried to stall Lynn when she tried to do it. Lewis told me that the normal parental response” would have been to call an ambulance, which is “what would have been expected if Lynn had not been a disabled woman”, and that my attitude amounted to letting the state off the hook.

However, calling Lynn “disabled” does not even begin to describe her condition. She was not a paraplegic who had attempted suicide in response to an emotional upset such as a relationship breaking down, or because she was unable to come to terms with being paralysed, like Daniel James; in fact, she had coped with being paralysed for several years. Her desire to “not be on this planet any more” was something that both her parents and her friends online were well aware of. She had attempted suicide at least once before and had entered a “do not resucitate” note in her medical files. A “normal parental response” is something you expect from a normal parent, not from someone who had dedicated more than sixteen years of her life to caring for such a severely ill daughter with very little help. The lack of outside care is striking; a person of Lynn’s age with quadriplegia on its own would be able to live on her own with round-the-clock care and personal assistance.

As for why she did not call the ambulance, the likely reason is that Lynn hated and feared hospitals. I was recently in contact with someone who was a close friend of Lynn’s, who I will call Maggie, and she told me that Lynn had been through a lot of traumatic experiences and escalations in her illness in hospital: they were where she was subjected to forced exercise “therapy” (this actually makes ME worse), where she was left to wet herself because the staff believed she was really capable of getting up to use the toilet, where she was repeatedly accused of faking her illness, where doctors tried to induce her to tell them she had been abused at home, where she nearly died when an operation to replace a Hickman line went wrong (after doctors ignored her when she said she could not breathe), where she suffered a fractured spine while being turned (she had severe osteoporosis), where she was awake during an operation to change a feeding line (or PEG) and a drug that was meant to wipe her memory of it failed, and where a doctor had raped her. The last place she wanted to be, and least of all to die, was in hospital; the place she felt safe was at home. She had lost hope of making a meaningful recovery, and the knowledge that she could not have children was particularly distressing to her. She did not expect anything else from life except more pain, sickness and medical abuse, and the normal things which bring comfort to someone in distress, such as physical contact, made her ill; she could tolerate even her mother’s presence for only a few minutes at a time. She also feared becoming brain-damaged and having to move into a nursing home.

It would not be the first time that disability activists had claimed as one of their own someone with impairments far more profound than theirs. Joni and Friends, a TV show hosted by Joni Eareckson Tada, a quadriplegic mouth-painter who became some kind of evangelical speaker with a focus on disability (Joni is pronounced Johnny, but she is female), did a two-part episode (part 1, part 2) on the case of Terri Schiavo, who was the focus of a court battle between her natural family, who wanted to take her home and care for her and insisted that, although brain damaged, she was still able to recognise them and minimally respond, and her husband, who wanted to withdraw her feeding because she was in a “persistent vegetative state”. Eventually, his case prevailed and she died in March 2005. On the JFTV show, the family alleged that after her injury, he worked together with them and put her through rehab programmes which had some effect, including some development of speech, but that after winning a malpractice suit against his wife’s doctors, he stopped her therapies and initiated proceedings to remove her life support.

It became difficult to work out who was telling the truth during that case, and after it an autopsy found that her brain had half the expected weight, with extensive damage to all regions of the brain consistent with a persistent vegetative state following cardiac arrest. The family’s attorney, Patricia Anderson, claimed (just over halfway through the video) that while Terri was normally still, she “lit up like a Christmas tree” every time she became aware of her mother’s presence “and began vocalising”. However, the videos replayed in this programme show that to be something of an exaggeration, although she did appear aware and seemed to be enjoying the attention.

The important bit of this programme, for the purposes of this essay, comes around the 75-80% mark and features George Felos, Terri’s husband’s attorney, and Joni Tada herself:

Felos: If you sat down with most people — at least, I believe — and said, “look, if you were in a situation where basically your brain was gone, was destroyed, and you would have no consciousness, no awareness, would you want your physical body to be sustained indefinitely through a feeding tube, through a respirator, through medical treatment?”, I would say that the overwhelming majority of people would answer “no”.

Tada: I am offended by that. I find that objectionable. Because if you are looking at Terri, you are looking at me, and nobody, certainly not me, wants to be disabled. But once you experience that accident, once you are disabled, you would be amazed at how quickly you change your mind. Life is that precious. I mean, watching those videos, Terri was connecting with her family. You saw it. She may not have been able to tell them, but her smile revealed joy just being with Mom and Dad and brother and sister, and that is what the courts refused to acknowledge: Terri’s right, Terri’s God-given natural desire to live.

The problem is that you are no more looking at Joni Tada when you look at Terri Schiavo than when you look at Lynn Gilderdale. They are, or were, three very different women with totally different impairments. Joni Tada’s disability is purely physical. Terri Schiavo was terribly brain-damaged while Lynn Gilderdale had a disease which causes crushing mental and physical debility, paralysis and pain. While I do not actually think it is acceptable to turn off the feeding of a brain-damaged adult who acquired the damage as an adult any more than of one who acquired it in a birth injury, for example, whatever judgement might be made on Terri Schiavo’s quality of life has no bearing on Joni Tada because the latter is not even mildly brain-damaged. Their disabilities are simply not comparable.

Returning to Clair Lewis, she suggested that the reason behind the ME community’s support for Kay Gilderdale was because they were “focussed on their impairments / own navels” rather than on “activism / social model / the world and how we form a part of it or not and equality”. The “social model” of disability she is referring to essentially stipulates that a person with a physical disability is unable to participate in society because society puts barriers in their way which it has the duty to remove as much as possible, while the “medical model” holds that the disabled person’s impairments are themselves the reason why the affected person cannot participate. The problem is that, when you have a condition like ME, the social model shows its limitations, because it is difficult to participate in society at all when you have to live lying down in a darkened room, and cannot tolerate light, sound or human company for more than a few minutes at a time. As it happens, Lynn Gilderdale participated as much as she could by communicating with, and giving a lot of personal support to, people in similar situations to hers and to others (among them, a ventilator-dependent quadriplegic woman with a terminal mitochondrial disorder, who eventually died around the same time as Lynn, albeit from natural causes). Maggie told me that she continued doing this until the end, making efforts to cheer others up, albeit through briefer messages towards the end. Her family participated in efforts to raise awareness of ME, which included having Lynn’s picture on the masthead of the 25% ME Group website. While I do not doubt that there are those with ME in the disability movement, the activism potential of those severely affected is fairly limited.

I believe that the disability movement’s opposition to legalising assisted suicide and euthanasia is the correct position to take, not only because of the sanctity-of-life considerations you might expect from someone with a religious commitment, but also because it has the potential to put disabled and elderly people in a very difficult position. In the recent past, even in countries like the UK, the USA and Australia, to say nothing of Europe, there have been atrocities committed against people, particularly children, with disabilities, including shutting them in “homes” and “schools” in which they were neglected for years, sterilisation, official “euthanasia” programmes, selective abortions for even trivial impairments, and the suchlike; the fear is very real and justifiable. However, I do not believe these do their cause any favours by seizing on extreme cases such as this one which involve people who are not merely disabled but incessantly and miserably ill over a long period, and treating these incidents as if they were a threat to disabled people generally. Lynn Gilderdale did not kill herself because she was disabled; Maggie told me that her own greatest goal at present was to be able to use a wheelchair (she is currently bedridden). Lynn took the action she did because she was, as her friend put it, “soul-weary” after years and years of pain, loneliness and enforced inactivity — a similar lethal combination to that which had almost pushed Hilary Lister to a similar course of action five years earlier ([1], [2]) — compounded with abuse, recurrent medical disasters and very restricted opportunities to talk about her traumatic experiences with anyone or receive physical comfort. That people rallied around her mother is no reflection on their attitudes to disabled people, and whatever anger is being directed at Kay would be better aimed at the doctors who caused her condition to get to the point it did in the first place, and channeled into making sure they, and their attitudes, cannot destroy someone’s life this way again.

Last Tuesday, the Guardian published on its website an article by Emily Levick, who suffered from severe ME for some time and was part of the same online community of sufferers as Lynn Gilderdale, who was known as Jessie Oliver within that circle although some of them did know her real identity. Many of them could not get out and have a social life, because the normal means of doing so were impossible. Many were housebound and others were confined to bed. Lynn herself spent all but the first few months of her illness lying down; she could not even hold her head up without passing out. She also could not speak.

So, their computers and internet connections were a lifeline to them. They were able to interact with others who shared their interests or needs as equals, rather than from a position of dependancy. They would have been able to find others in the same situation in other parts of the world; distance would not have mattered, as even if there had been someone in the same condition living nearby, physically making contact would have been almost as impossible as if they were far away or on another continent. Some of them also used their connections to help with campaigns and raise awareness of their condition, such as via the 25% ME group (the pictures on the masthead are both of Lynn), and to pursue other interests.

There are, admittedly, examples of fakery in online and other long-distance friendships. People can conceal things about themselves and present an entirely different face to the one their family and (if they have any) offline friends see. The BBC producer Victoria Brignell wrote an article a few months ago about how she has maintained a penfriend relationship with a lady in Australia since she was 13, never having mentioned that she is paralysed from the neck down. As she explains it, she saw an opportunity to have a relationship with someone that was not affected by her disability; this person would not see her wheelchair or her dependancy on others for very basic things. She never lied, but just left out the bits relating to being paralysed. More recently, she decided to tell her friend about it. She has not told us the result yet!

Is this kind of concealment a bad thing? In my opinion, not really, unless the deception is for gain or intended to harm the other person. I would also say it was immoral to conduct a relationship with someone on an entirely false pretence, such as pretending to be something entirely different from what one is, such that they would not have had a relationship with you if they knew. It is sometimes possible to present a different face online when one’s communication is less encumbered by physical limitations. Whoever saw Lynn Gilderdale in real life would have seen a very ill and dependant woman who could not readily communicate, and some of them described her as a vegetable (she never was); those who knew her as Jessie Oliver online knew someone who was very vibrant and articulate. As one of her friends explained on Facebook, “her explanation [for using a pseudonym] was basically that as she became strong enough to use her pda to come online she could create a world which was just hers that her family and the campaigners who knew her family were not involved in not as any disrespect to them, but purely for independance … maybe jessie was her life her soul, jessie was who we saw, because online she could get across the personality which was so strong and beautiful which she just couldnt get across in her semi paralysed state in which she couldnt even eat drink or speak”.

And besides, do people not conceal and hide things from their face-to-face friends, even family? Of course they do. You cannot hide obvious things, but you can keep secrets of things you do (or don’t do) at certain times of day when people are not looking, for example; this could be a medical procedure, an act of religious devotion, or something like meeting the girlfriend your wife doesn’t know about.

However, I hope everyone gets the message that online friends are not necessarily fake and are a huge source of support to those who cannot find friends any other way, for whatever reason, including because they find that the people they meet every day are not exactly friend material. In addition, it is common even for face-to-face friendships to be conducted partly online, or to move to a more online basis when one party moves far away, such that more contact is available than was the case twenty years ago, when long-distance phonecalls were expensive and correspondence took days. I agree that the term “friend” is used for any online acquaintance, such that someone can “friend” someone else they have never heard of. But online friends can also be real friends.

I expected Emily Levick’s article to be in the print edition some time last week, and I was disappointed to find that it did not appear. I wrote the author and told her that it was “one of the most powerful articles I’ve read in ages”, and have also written the Guardian to the same effect as well as a very brief criticism of Hadley Freeman’s article. The article was part of their “First Person” strand, which used to be a two-page spread and often featured very interesting and sometimes moving personal stories. More recently, they amalgamated it on a two-page spread with their “private lives” advice column, itself somewhat impoverished with Linda Blair gone, and now it seems to have disappeared entirely. Perhaps “human interest” stories are too downmarket for the Guardian, unless there is a political agenda attached to it (as with recent stories about foster care in north London and stalking). In the case of this particular article, perhaps the Guardian felt that it reached its target audience online.