Monday, 12 November 2012
In between trying to keep up with BBC resignations and writing obituries for Newsnight, the frenzy around recent revelations about child sex abuse in the UK has also centred a lot of attention on anonymity.
The role of anonymity in sex crimes cases has always been a red button issue. Victims and alleged victims of sexual crimes are guaranteed anonymity under law in the UK. They cannot in any circumstance, not even under parliamentary privilege Lord Campbell Savours, be named in public. This is in fact a criminal offence, punishable by a fine, as seen last week by the case of 9 people who named the victim of Ched Evans. This anonymity is extended to victims of historic abuse and child sex abuse no matter at what age they report or speak out.
Currently there is no guaranteed right of anonymity for those accused of sexual crimes. This was in fact abolished by the Tory government in 1988. It used to extend to everyone accused no matter what age the victim was. I've blogged before about the current government's aborted idea to reintroduce anonymity for those accused of rape against adult victims and while I still acknowledge there are big flaws with that proposal, I remain generally convinced that while emotions are so high and the system so poor, anonymity for accused but unconvicted sex offenders should be considered again.
I'm afraid I just don't buy the line that if we kept people's names anonymous before conviction it would affect the rate of conviction because other victims couldn't come forward. Well, I don't know if you've noticed, but the conviction rate is pretty piss poor under the system we've got right now. Even in cases where multiple victims come forward with identical allegations, they get ignored and nothing gets done. The John Worboys case did not get the conviction it did because the police allowed his name to be put forward. It didn't even get to court because of the number of victims involved. It got to court (as did Kirk Reid) because one officer pieced together several allegations over several years and because the Met held an internal investigation into the entire Sapphire Unit based around six cases and it became apparent that there was so much evidence against Worboys and Reid that the CPS couldn't not prosecute. But here's the thing, all that evidence was already there. It just hadn't been taken seriously until the Met was forced to investigate itself.
Both men were convicted with a clear jury majority and very little deliberation and sentenced to comparatively long sentences for their crimes. Only then did the police release their names to the public and appeal for further victims to come forward. They and the courts had used the current rules to suppress the name through reporting restrictions prior to conviction (basically to cover the Met's arse so their failings didn't come out in such an obvious way.) Countless more women came forward as victims of both men. No futher court cases have ever happened. But somewhere along the line, the Worboys case has passed in folklore as the example of how anonymity for the accused prevents convictions. The Met trot it out a lot, but then again, they're desperate to make themselves look good over Sapphire in any way. But annoyingly I see many feminists parrot the same line unquestioningly. I think I remember the whole PR episode slightly differently over both trials as my case was one of the six and I spent time dealing with both the Met and the press over that time. Not once did the Met mention either name even in private meetings with me about the issue nor did any of journalists who contacted me wanting a victim's perspective about police failings. In fact I was specifically asked by several journalists on both cases about the fact the names had been withheld until conviction.
I'm not going to re-hash the stuff from the previous post as I think I made myself clear, but I've had new concerns about anonymity since then. The Savile scandal broke because Karin Ward was brave enough to come forward to Newsnight and speak out while waiving her anonymity. I applaud her for a decision of unbelievable bravery. But I also have a worrying feeling about the precedent it set in the media and the public's perception (none of which is Karin's fault.) It transpired that there had been constant suspicion and accusation against Savile for nigh on forty years. But it wasn't really taken seriously until someone spoke out fully identifiably, creating an idea that unless a victim is prepared to waive anonymity, their allegation isn't worth listening to. It's raised the stakes. It's now not enough speak up, recount painful, traumatic and desperately personal details, fight your own corner with the police and CPS and in some cases, submit every single centimetre of your body to forensic examination; now you need to declare your identity to all as well.
Well, some of you might say, if you're going to accuse someone of a terrible crime, you should be prepared to face them and them know who accused them. But that misses the point. Anonymity only refers to public anonymity. The police, the CPS, his defence team, the judge will all know who you are. The fact they take pains to prevent that information being easily ascertained in court documents or to the public gallery doesn't prevent you as a victim having your entire life picked over to persue a court case or your attacker not knowing who brought the case against them (because it's the Crown that brings the case. Not the victim. They simply become a witness to the case.) All I see that comes out of waiving anonymity as a pre-requisite of an allegation being taken seriously is that allows more opportunity to measure that survivor by the arbitrary rules of the 'perfect victim' and since they are humans, not textbook examples, find them failing. This allows society to be more likely to see victims as liars because they aren't matching the preconceptions people have and become hostile to them.
And not just that, I think it actually does the opposite to what the people who are so worried about false allegations and people's reputations being needlessly ruined want. It adds a gossipy salaciousness that actually encourages trial by media and public instead of considered trial by evidence. Look at the feeding frenzy over Savile where the tabloids and gossip magazines have chased up every celebrity woman Savile ever worked with and shown endless clips of him making Coleen Nolan look like she wants to be sick as he manhandles her. It doesn't actually validate the victims' abuse, but turns it into a spectator sport ripe for comparison to everyone else's life. It actually minimises the experience and bravery of survivors to do this because obviously no footage exists of the rapes and more serious sexual assaults, so people see Savile paw young women on primetime telly and think that's all there was to it. Cue loads of people recounting the time some creepy old bastard felt their arse and you didn't see them running the papers or police, looking for money.
Oh yes, money. People who have never been sexually assaulted by someone rich, famous and powerful seem to think it's akin to a good tip on the gee-gees and a surefire way to get some cash. It never occurs to them that the majority of victims speak out because they are trying to defend themselves, seek justice and be heard after assault has rendered them invisible. They think they just want a pay out and it's all about greed because being attacked by a well known person is actually a blessing, not an incredibly traumatising and isolating experience. They have no idea that it's actually incredibly difficult to get compensation for sexual crimes as you must fit very exacting criteria, including not allowing the police to 'no crime' an allegation, the attacker not be dead and that victims of child sex abuse who 'consented' are already excluded from the criminal compensation criteria. They could of course persue a private case for compensation from their attacker or their estate, but legal aid for such cases have been withdrawn so they would have to pay their own costs upfront for a case that might rumble on for years and that has no guarantee of success and could leave them bankrupt as well as traumatised. As ways to get rich go, it's about as failsafe as a trip to Ladbrokes, but you don't get free tea or coffee.
And if you do get awarded any form of compensation, you will have your character further assassinated and see even more gossipy interest in the person who attacked you. Sunday's hatchet job by the Mail on Stephen Messham mainly seems to focus on the fact he was compensated for the systemic abuse he suffered as a child. Put bluntly, where there's a payout, there's guilt. No one pays out thousands of pounds to someone who alleged sexual abuse unless something happened. So when Messham spoke out about a senior Tory abusing him, everyone knew there was a story. Newsnight knew who Messham was (obviously) and because he'd spoken out before using his identity, they could build a report and a backstory without even checking things with him. His payout was their guarantee he'd be taken seriously when they broadcast the piece as it showed legitimacy as a victim. It's also the very thing that the Mail and David Mellor and others have used to slam Messham now that it has come out that he misidentified the Lord in question.
Declaring his identity and refusing to be shamed by being a victim has been used as a tug of war over Messham with both camps pulling and pushing and leading to an appalling situation where the victim has had to apologise and everyone else escapes blame and navel gazes. Newsnight knew fine rightly that the teaser of an identifiable victim, a political connection and society's need to look like it was being tough on abuse would lead to people naming names without proof. And they did in droves. Some did it because they genuinely thought they were protecting potential victims, others did it because their desire for gossip and political point scoring was greater than the desire for justice, some wanted to bait the PM and get good ratings. But the name of a man who did not abuse children got put out there and burned down the Bush Telegraph of the internet.
Everyone should have known better. They prejudiced any potential trial, they showed themselves to be shallow and not really concerned with the victims, they slandered the accused's name and they destroyed the reputation of the abuse victim. It was a perfect storm of supposition, presumed certainty and intrigue and in my opinion, none of it would have happened if Stephen Messham hadn't been identified so clearly. I don't know if he wanted to be identified for personal reasons and I respect him if he was willing to do that, but what I object to is Newsnight allowing him to do that without checking the details properly because what they did was make him the face that people associated with the scandal so when it went tits up, no one had an image and a name in their mind for the editor of Newsnight. Entwhistle might have gone over it, but it's Messham people are writing personal pieces about it that dredge up his life, family history and reputation. No one's asking if the middle class Newsnight editor involved might have become an attention seeker because his parents sent him to piano lessons at 8.
Newsnight had a duty of care to a traumatised man with a history of serious psychiatric problems and they fucked up completely. I am not suggesting that survivors are fragile little flowers who should be treated as damaged goods who cannot have opinions and speak for themselves, but I am suggesting that the media doesn't just run for short term ratings and hang a victim out to dry to get them. They should talk through the potential consequences and offer support if the survivor still decides to speak out with anonymity. But that's not happening. I've done a lot of press over the years about my rapes in various guises and still do if I feel it is helpful. It used to be very very rare to be asked to waive anonymity, but it has become increasingly standard. Just last Thursday I was asked (indirectly, not just me) through the women's org I volunteer for to speak to Glamour magazine, but only if I agreed to be photographed and identified. Cosmopolitan and Grazia do the same. Personally I don't think the organisation should be asking their clients to do this even if it guarantees publicity and funds for the scheme and I declined, stating that fact. If a survivor wants to speak out using their identity, then I'm not going to stop them or criticise them, but I'm going to speak up about the press blackmailing us by only covering sexual violence if anonymity is waived.
That makes me hugely uncomfortable. It plays into many rape myths and the idea of the 'perfect victim' in a very unhelpful way. Women's magazines will only feature the 'right' person: pretty, thin, white, middle class, probably had a conviction in their case or an 'acceptable' type of rape such a stranger/stalker rape. Not for the glossies will women who might fat, trans*, gay or bi, sexually active outside a relationship, working class, drink alcohol, take drugs or have been groomed be rape victims. Men will continue be invisible as victims and women will continue to minimise their experiences as 'not real rape' and so not seek justice and blame themselves not their attacker. The fact that 80% of victims know their attacker will be ignored and we'll continue to be asked to change our behaviour, not tackle rape culture and patriarchy. Cosmo will carry on printing 'good news' rape stories even though they seem to have relaxed their policy on only featuring victims who aren't single because to them rape isn't the tragedy, it's the fact you might end up single because of it. Much easier to push the idea that the thing to help you overcome the actions of a man attacking you is to find the love of a good man rather than seek to campaign for justice and resources, speak up about the culture that silences victims and allow women especially to support each other.
You, in this day and age of the internet when all prospective employers and partners Google you, are asked to permanently link your name to the crime committed against you so that a magazine or TV show gets its prize and moves on. It's actually long term victimisation that never allows survivors to move on and rebuild their lives. It's condemning them to be 'damaged goods' and feels like punishing them for speaking out like seems to have happened to Dominique Strauss Kahn's victim in New York. And it's not strictly neccesary to get the message out. I have successfully spoken out widely and never revealed my identity. 99% of media (print, radio and TV) have been very happy for me to use my alter ego Helen Jones and never asked me to reveal the real me. In fact I considered doing so over my compensation and the BBC journalist refused to take the case if I did. My family also asked me not to since we have such an obvious name and my solicitor advised me not to. Plenty of people do know who I am and yet they've never exposed me or accidentally revealed me and in hindsight, I'm glad I didn't expose my identity when actively campaigning. But when I was utterly possessed by the need to be taken seriously and heard by someone because the police had let me down so much, I could very easily have thought that it was the magic bullet to declare my identity and done so, only to have been left to deal with the consequences by myself for years to come. The media can be very persuasive and I'm concerned they sell a scenario to trusting and desperate people who think the reporter really really cares because they've spent hours listening to your story and I think anyone who waives anonymity should have some support and advocacy when doing so.
But the media also has a role to play and that role is to stop putting pressure on survivors and seeing them only as the means to an end. I'd like it if we could expand the discourse on sexual violence and get people talking about it more, but ultimately I think in this case it would be better to have less said in the media, but much better than risk repeating the truly cavalier attitudes of recent weeks that have put survivors under unbearable pressure, threatened innocent people's reputations, made it easier for guilty parties to hide in the shadows and made it more overwhelming and difficult to report rape of any sort. I'm not suggesting anonymity for both parties would solve all the problems of this rape culture and everything will be glitter and kittens in comparison, but the situation isn't working right now and no one in the media, let alone Leveson, is addressing it any other way so I'm not sure what else can be done that makes an immediate difference?
Friday, 12 October 2012
We all know the answers. What chance would a girl from an approved school or Broadmoor have had if she'd spoken up against a man draped with honours from the British Establishment and Catholic Church and who spent Christmas with the Prime Minister? None. She wouldn't have been believed for one second. And so these victims remained abused by the visibility of their attacker and he carried on unchecked and growing in confidence with every year.
You shrug and say 'but that's how it was then. Things have changed now.' And I say that, no, they haven't. Women still live their lives in a culture where the default setting is not to believe them. And not just about rape. About everything. This runs on a spectrum of 'you're lying' to 'are you sure?', taking in destinations such as 'I think you're overreacting' 'well, I haven't seen anything' and ' why don't we wait a few months and see what happens?' It happens whenever women try to report anything that happens to them from a particular Pill causing problems or periods being painful (it on average takes 8 years to be diagnosed with endometriosis), or their child just not seeming right in some way, to saying that that comment in the street wasn't a compliment or that when their partner does certain things it scares them. Their word about wanting or needing an abortion has to been agreed by two doctors while a declaration that you don't want kids is always accompanied with the order that 'you'll change your mind.' Women are constantly seen as unreliable at best, deceitful and out to destroy someone at worst.
And yet the irony is that the destructiveness of disbelief affects women primarily. They are the ones who live with the consequences of being disregarded, maligned and told their word is neither valid nor valuable. This has the effect of silencing women everywhere in life. It's very hard to stand up at work and suggest something unknown or risky with conviction when you're constantly being told you're not even an expert on yourself, your life and your body. This undermining seeps out into the rest of society. Men learn that their word is always seen as more important and often feel cossetted by that protection. Girls, who are seen to combine the silliness of children with the duplicitity of grown women are left horribly vulnerable and boys internalise that being seen to be girlie in anyway is the worst thing that could happen to them.
Being believed is like being scooped up in the strongest pair of hands. It's like being attached to a harness and rope while climbing the unpredictable rockface of life and knowing that you can hug tight or take a risk and swing out and that you will be fine. It builds confidence, it forms a barrier than makes it hard for the corrosiveness of self doubt and loathing to errode. It allows you to pick yourself up and face life without having to waste time and energy on fighting your way just to be heard let alone your actions acknowledged. It's vital to be able to heal and move on from painful paralysing experiences and unlike complicated interventions, it's free and easy. It just relies on kindess, humanity and being a decent person with a certain amount of humility.
I have faced a lot of disbelief in my life. The most striking example, of course, was trying to report rape. The first time, there was just a wall of doubt and denial driven by the fact that my attacker's uncle was well connected and there was a delay in reporting. I'm not stupid. I knew that not being able to produce forensic evidence would be a stumbling block. I half knew that reporting wasn't going to go anywhere, but having been told that what I was saying was unladylike by the woman at Victim Support (who could barely hold the phone for pearl clutching) and then having my GP refuse to note the assault on my medical notes, I needed an acknowledgement, some visible marker of what had happened. It was too much to comprehend that my whole life had been turned upside down and yet there was nothing tangible to see. I presume this is a similar emotion that women who have had miscarriages and stillbirths feel and why momentoes, photos and death certificates are so important? I wanted someone I could trust, who was impartial and who could be proactive to say yes, this happened. I needed to be believed. I simply couldn't believe this had happened and I needed permission to let myself start addressing it in order to make sense of it.
Instead I got total hostility, enhanced with sneering and judgement. I could come to terms with him not being punished as long as they'd investigated. Investigating is a form of belief. Ultimately I'd have liked the bastard to face some consequences, but I could more easily have come to terms with being told 'I'm sorry. We believe that he did this to you, but unfortunately because we can't find this evidence/the law doesn't allow/we can't prove it, we can't do anything, but we'll bear it in mind.' It would have taken less time that the lecture they gave me and I'd have gone away feeling something had been done, even though really it hadn't. Call it placebo policing. Call it being half decent to a traumatised victim. It certainly wouldn't have left me feeling so angry and helpless and fucked up.
I think I could have coped with that disbelief, and the version a few months later when the police seemed to believe I'd been raped that time but not that I deserved anything being done about it, if it was an isolated event, but disbelief was coming from everywhere and had been for years. Since the age of 14, I have suffered from nausea almost daily and then strange abdominal pains. I went to doctors repeatedly and was told it was all in my head, was I sure I wasn't pregnant?, it was lady trouble, growing pains, just something I had to live with and a multitude of other disbelieving, don't give a shit responses. Of course, it wasn't any of those things. It was gallstones and the offending organ was whipped out in 1996 and the problem was solved.
Except it wasn't. The nauses remained, now joined by literally gut wrenching diarrhoea and unexplained pains. After months of strong painkillers and hospital visits, the pain was found to be secondary stones. All fixed. Except that 16 years later my life is still dictated daily by nausea and diarrhoea. At least 9 GPs have disregarded it, telling me it can't be that bad (despite admissions to A&E on occasion and extreme weightloss at times), that all women get a bit of a dodgy tummy at that time of the month, I'm attention seeking, I eat too much fat/too little fibre, I've only got IBS and even though I'm medicated for both conditions, I don't really need it but they're just humouring me because after all it's well documented that I'm mental these days. Desperate and unable to work because of it, I asked to see a gastroenterolgist for 6 years and was refused time and time agian. I wanted to argue, I wanted to stand up and say 'listen to me', but having been disbelieved that I'd been bitten, that I'd been raped, that I was really properly homeless, that I'd had no real investigation by the police, that I really really did want to complain about the police, that my drinking hadn't caused the second rape, that I qualified for benefits, that I needed psychiatric help, that I was ill, that I was worth being helped, that I wasn't looking for attention, I just couldn't find my voice for that. I took the pills and carried on dealing with everything else.
And I met some people along the way who don't ask for explanations and justifications, but who just believed what I was saying. My solicitor who backed me to the hilt over my compensation claim and practically used her buff folders as pom poms as she cheered me on to claim the compensation that was a tangible acknowledge of what had happened. The therapist at the Chronic Fatigue clinic who convinced me I was ill and not just imagining it. The employment advisor who heard me say I'd never work again and who believed me that I felt like that while believing I still had a lot to offer. Friends who didn't quiz and query and question, but just accepted me warts and all. And eventually I felt ready to stand up to the GP who was blocking me and move surgeries. I stormed into the new one fired up and determined to be believed and was met by no resistance at all, only concern and help. Within 6 weeks I was sitting in front of a gastroenterogist, mouth open to defend myself, only to be interrupted by him and told I had quite definitely got something very wrong with me, it was no more in my head than the man in the moon and it should have been sorted years ago.
Like many people who have their gallbladders removed, I suffer from something called bile salt malabsorption and biliary gastritis which is basically a fancy way of saying that without anywhere to store bile, the stuff is sloshing round in huge quantities in innards making them angry and inflamed and causing terrible nausea and diarrhoea. It's not serious, but it's not pleasant and the longer you have it unchecked, the harder it is to control. But none of that really matters. The kindness and respect and belief of the gastronenterologist confirming what I knew all along was medicine in itself. That 30 minute consultation did more for my mental health than the 100 hours of therapy I've had.
All the psychological help in the world isn't much use when everytime you try to trust yourself and your feelings, it is undermined by someone's else disbelief. It just makes you more confused, more torn and feeling under greater attack.
But what happens if the person talking to you knows you're actually wrong? What if the gastroenterologist had been utterly sure I did have IBS? What about all those people over the years who knew that my eating habits were in fact totally fucked up and not normal like I insisted? Or if you can see that someone is drinking themselves to death? Do you just take their word for it, show no challenge and believe them no matter what? Not exactly. Having a belief isn't the same as believing someone and pushing your belief above all else, even if it's correct, simply raises the stakes. It makes the person in denial have to spend their time and energy on battling with you, not dealing with themselves and looking at their behaviour. It turns genuine concern into a battle of wills and in repeatedly explicitly telling that person you don't believe them, you also tell them they can't come to you and talk to you even things change because you don't trust them. You can express concern, you can remind the person that you're worried and that they don't have to put up with things and deserve better, but you will never help someone get to acceptance faster by disbelieving them. It's counterproductive.
Nothing pushes my buttons more than that air of disbelief. When you ask those forensically minded questions about what I did when I was raped that sound like you need tangible proof over my word, you disbelieve the biggest thing that's ever happened to me and if you disbelief the big things in my life, you can't believe the little ones. You're doubting me to my face and yet expecting me to not only put up with it but not question you in return. You've put me in an impossible situation where if I try to prove I'm right, I'm almost trying to prove a negative. It's like the more you tell someone you're not mad, the crazier you sound. I can hear myself frantically defending a point so trivial as to be inconsequential and thinking that I sound mildy hysterical to myself, let alone anyone else, but unable to stop in a frantic, out of control way.
It's a trait I'd dearly love to remove from my repetoire. It plunges me into a vortex of self doubt, anxiety and PTSD, but not only can I not avoid it, I don't want to lose the knack as it's engrained into the benefits system on which I am completely dependent. To qualify for sickness benefits, a person (or a panel) will quiz you about the absolute fucking minutiae of your daily life. A recent tribunal for DLA saw us spend a good ten minutes on what I'd do with a pork chop and another five on my tea making skills. No matter how genuine you are, when someone asks you to go through the making of a hot beverage second by second, it's impossible not sound like you're lying. Truth does not respond well to slow motion time and the more you try to correct the fact it sounds wrong, the worse it gets. It's like trying to walk in a straight line when pissed. You wobble more when you think about it. For me it's like being back in the police station. I feel as exposed as when they were shuffling the photos of my naked body, but the stakes are higher. It's my home, my sole income, my ability to survive let alone thrive. It all depends on someone believing me. I'm not optimistic.
I guess all I can do is learn to believe myself. The self fulfilling prophecy is that after years of being doubted, I really believe myself or believe in myself. I find it hard to accept that sometimes, especially in the matters of my own life, I know better than other people and that generally my instincts have been better than not. But I don't find it hard to believe in other people. I never apply the same doubts I have about myself to other victims who come forward and I find it easy, in fact edifying, to be their cheerleader. And I wonder if that's how we learn to cope? We throw ourselves into supporting those whose situations mirror ours and hope that some self belief reflects back on us and that makes it easier to deal with that constant inbuilt doubt toward women? Do we gradually create a wave of women who are able to stand up to that by standing together and sharing belief amongst ourselves?
I don't know, but I really hope that the discourse round the Savile victims and the work done by the Mumsnet campaign and hashtag of #Ibelieveher are starting to change things slowly, but surely. I think it's obvious that the culture of disbelief creates more chaos long term than it seeks to calm or ignore and does not serve the majority at all. We need to start reaching out and supporting people who try to tell us things we don't want to be bothered with, no matter what it is. Only then will we not hear the phrase 'just the women' again in a hurry...
Posted by gherkingirl at 10:00
Saturday, 29 September 2012
After around 20 years of having chronic fatigue I've lost patience with it and decided that something must be done. I'm sick of never knowing how I'll feel from one day to the next or what nice thing I'll be missing out on next. So when my mental health therapist told me about a Chronic Fatigue unit at my local hospital, I moved faster to the GP than I knew I could and asked for a referral. Barely any time later, I was there and things were beginning to looked at.
Chronic Fatigue is a peculiar condition. Nobody is quite sure exactly what causes it and half the time, most of them can't even agree what to call it. It can also be known as ME or Myalgic encephalomyelitis, but even then some people say they are slightly different beasts even though I've never got a straight answer of them as to what the differences are. Neither illness is just being 'tired all the time' or 'yuppie flu'. In the days of fainting couches and smelling salts, it was known as 'neurasthenia'. I'm not fussed how other people describe their illness, but I prefer Chronic Fatigue as I feel it conveys the jist of my illness to people who know nothing at all about it (while also being easier to spell) than myalgic encephalomyelitis.
Unsurprisingly fatigue is the main symptom of CFS/ME, but not the only one. As I said it's not just being tired. Fatigue is more than simple tiredness. It's more like as if part of your very being has changed. It's like wading through treacle, like craving sleep in the same way you do water when dehydrated. It affects mind and body together. It's unpredictable and cruelly with CFS the fatigue tends to be post extertional and out of proportion to the extertion. So while a healthy person would expect to be tired after digging the garden or swimming 5 miles, a person with CFS can be fatigued to the core after taking a shower or taking the rubbish out to the bin. Sometimes the body plays tricks and lets you feel 'normal' while you're doing something like walking round the shops or having coffee with friends, but a level of utter exhaustion catches up with you the next day that is like a hangover, leaving you incapacitated and blurred with a lassitude that cannot be shifted by sleep or rest.
This exhaustion is garnished with other symptoms to enhance just all encompassing it feels. Your brain is fogged, your joints hurt, you have constant headaches, swollen glands, sore throats and a variety of unexplained digestive issues. For me it's best described as having the onset of proper influenza where your body feels barely able move and everything twinges and aches unspecifically while also co-incidentally having a hangover and a tummy bug while in the first trimester of pregnancy due to extreme nausea. While this illness won't kill me or like other people with ME/CFS lead to me being bedbound or needing to use a wheelchair or mobility scooter, it does make normal living bloody difficult and render many days of my life feeling miserable, hard to bear and deeply unenjoyable. The only surprise is that's taken me this long to lose patience with it all and seek help.
But hang on, didn't I just tell you no one really know what causes CFS? So how can you seek help? Well, that's just about the most contentious question in modern medicine. The current treatment for CFS/ME is based round Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) leading some people with CFS/ME to believe that modern doctors see CFS/ME as being all in the mind (or at best a mental illness and at worst a spurious made up invention by lazy people). While I don't doubt that a lot of people are sceptical about CFS/ME, I see the CBT route as being more about helping people cope better with a bad situation. It's used for other illnesses with a fatigue based component like Post Polio Syndrome with varying levels of success as you would expect since no two people are the same and no therapy or medicine works exactly the same for everyone.
However not everyone else agrees. Suffering from Chronic Fatigue is an odd beast. For a start it's the only illness I know that no one can quite decide what it is and where one of the symptoms seems to be competitiveness. Some people say that the illness is Chronic Fatigue Syndrome and that can include people with Chronic Fatigue, post viral fatigue syndrome and Myalgic encephalomyelitis (ME). Some say that it isn't a syndrome, isn't capitalised and is completely unconnected to ME. Some use the names CFS/ME interchangably. Some think Chronic Fatigue is all in the mind and that ME is a neurological illness caused by auto-immune disease or inflammation of the brain or viral infection or some use it as the basis of HIV denial. No one can agree what the illness is, what it's called or how to tackle it.
This makes trying to research the illness almost bloody impossible. You know you're desperate when you willingly Google an illness, but unlike a normal trawl through WebMD or the equivalent, I haven't come away knowing anything more definite about my illness. Instead I've mainly read a lot of people trying to claim a name for their illness and trying to insist that their illness is worse or more real or more serious or more worthy of research or harder to cure or just different to the other person's. A lot of ME sufferers prefix that name with 'neuro' and insist that CFS isn't ME and you must have a diagnosis of ME before you can use the word ME, but not one has been able to tell me how to go about getting a diagnosis of ME instead of the apparently vague and seemingly lesser Chronic Fatigue (let alone whether you have the syndrome or just the descriptor). There's some muttering about how treatments for CFS don't work for ME, but no definition of the difference between ME and CFS so you know which treatments to try.
Realising that the internet isn't the best source of unbiased info, I turned to one of the ME charities. They elaborated that they also give help and support to CFS and post viral fatigue syndrome and use the umbrella term, but don't offer much detail on their site as they understandably want people to join their site and give them money to access detailed information, thus helping the cause. Unsure what exactly I was after, I phoned them to get some advice and was treated to another dose of competition between Chronic Fatigue and ME but with a side helping of patronising when I enquired if they had any info about ME/CFS (their term) and mental health issues? It was spelt out to me as if I was a 3 year old that while CFS might be psychosocial, ME isn't and thus isn't a mental health condition (and whisper, is more serious.) This got my goat for the fact I'm finding it fucking frustrating after more than the half the years of my life having been turned upside down to be told I'm not as sick as (insert correct comparison here) all the time. I also clearly explained that my mental health had developed separately and was given a real blast of disapproval that I'm weak enough to be having mental health issues at all (even though many people with chronic illnesses of all kinds develop them.) I hung up when I started getting a disapproving tone about undergoing the treatment of Cognitive Behavioural Therapy (CBT) at the Chronic Fatigue unit at King's because 'oh, you've only got a diagnosis of Chronic Fatigue, not ME'? as if I'd failed the entrance exam. Not once since I got sick at 14 have I cried over my health, but tears were pouring from my eyes after this scolding.
Well, here's the thing. I've actually got a diagnosis of both illnesses. I've had the diagnosis of ME since 1996 and the one of Chronic Fatigue since 2011. I tend to describe myself as having Chronic Fatigue to people when I have to explain my ill health because almost no one knows what ME is and when they do they associate it with 'yuppie flu' and the term gets me nowhere fast. Chronic Fatigue, while possibly inaccurate, at least conveys the main problem I have in words people understand. I was diagnosed with ME 16 years ago and precisely nothing happened. I sat on the sofa for nearly five years until I felt well enough to enter back into the life someone in their early 20s should have and apart from giving it a snappy title, the medical establishment didn't do much until I went to the CF unit late last year where they gave me a tentative diagnosis of Chronic Fatigue and began running medical tests alongside beginning the CBT programme.
I wasn't thrilled. I was hoping for a bit more to be honest that the not very highly rated online CBT system and withdrawing about a pint of blood each go. I wanted some fireworks, something definite, some answers, not just palmed off with tests that had been run before and therapy that people had suggested was all about trying to convince you that you weren't really ill. I took the self help manuals they gave me and sulked gently until the opening session, preparing to defend myself that I really was ill, even if I didn't know the exact name, and that my mental health issues were not the cause.
My prickles were flattened immediately by both the calm demeanour of my therapist and the sheet of blood test results. Far from telling me I wasn't ill and it was all just in my head, both told me I was definitely sick and in fact, probably sicker than I'd thought. The blood tests indicated problems with my thyroid and Vitamin D levels (which was oddly a shocker to this shade loving SPF wearing agoraphobic) while flagging up further things to be investigated over my liver function, potassium levels and heart, my B12 and folate levels (my very high folate level seems to hint at a B12 deficiency) and my weakened adrenals. I was temporarily thrilled. Underactive thyroids and low Vitamin D levels cause fatigue. All this ME/CFS stuff was going to be irrelevant. I just needed those sorted and I'd be fixed!
So I began the talking stuff while we waited for the bloods to be re-run as comparison. I thought it would be irrelevant long term, but I liked my therapist as a person and was happy to chat to her. Like any good therapist she could get a conversation going and then astutely pick out information you hadn't even realised you'd given. She picked up on several things with me. My routine was poor and I was doing the classic cycle of boom and bust and draining every drop of energy while I had it and then lying drained for days afterwards. I also wasn't eating regularly. And these things needed to start changing.
We began concocting a timetable so that I could structure my day, rising no later than 9.30, eating something within an hour of that and resting at 11am, before eating lunch by 1.30 and resting again around 2, but not napping, popping outside for at least 5 minutes for fresh air and then going to bed by 11pm. I was also encouraged to try and stop what I was doing before I felt the familiar wash of fatigue and rest and return to it. It was all so very basic and considering I'd been expecting to be sent to the gym for 5 hours a day, a bit anti-climatic.
And hard. Really really fucking hard. All these simple basic tasks are rendered awkward and semi-impossible by fatigue, but add in the very disordered thoughts I have about food and the depression and anxiety that robs me of motivation and dynamism, it felt insurmountable. My first 11am rest was a whirling maelstrom of intrusive thoughts, bleakness and reliving as my brain swirled and raged and refused to switch off unless I promised it a long sleep on the sofa. Eating a cereal bar in between meals when I felt my energy drain was like choking down the removal of all I believed in. It was ironically exhausting, emotional and overwhelming. For several weeks I felt physically beyond awful and my mental health was battered and I felt tearful and emotionally battered in all ways, reserving all my mental energies for hating Atos with a passion as the only reason I was sticking with this was to make my migration to ESA easier later in the year.
Using my usual tactic of sheer bloody mindedness and inability to reverse a situation, I stuck at it. I'm not sure for how long as the mental and physical exhaustion seemed to make time stretch and distort, but several months at least. But then one day I started to notice something. Instead of struggling with the emotional hell of resting, my brain knew it was 11am on the dot and I slid onto the sofa gratefully and there was only calm in my mind. I found myself eyes closed, deep breathing, mind neither blank nor racing and feeling utterly refreshed at the end of 30 minutes. It was odd. I haven't felt refreshed by much for years, but there was a distinct boost. I felt rested. And with it, I felt my stamina begin to grow and I felt it less pressing to have to see things through to the bitter end without stopping. I could pause and return feeling refreshed. I was getting much more done and having fewer days of highs and lows. I was 'conserving and preserving' instead of 'booming and busting'.
This is not to say that people with ME/CFS would be cured if they rested more, ate more regularly and just tried harder. Resting and pacing has not cured my underlying illness. It has simply helped me know my own limits and teach me to work better with my body so I give as well as take. I have fewer days where I feel energetic and normal and like I could take on the world and I miss that, but have to remind myself that the pay off for losing those highs is escaping the lows. I've begun to see the interplay between my mental health issues and my physical conditions, but not everyone has that connection to address. My digestive issues haven't improved one jot and I've just grown more frustrated by them as I realise just how much they hold me back. My memory has worsened since I started treatment in February, leaving me unable to recall things from 30 seconds, 30 minutes or 30 days before at times, but fine on 30 years ago. It has not been a magic bullet or a cure all and I have found myself wondering how it would apply to people who are much more incapacitated than me.
But I am so glad I am doing it. I feel it's enhanced my life hugely and it has built upon the treatment I had for my mental health issues (I realised my agoraphobia was also driven by a fear of becoming too tired or ill when outdoors to get home again or become physically vulnerable.) I've become more accepting of being ill. Until now I've hidden it and been ashamed of it because it seems so wrong for someone so young to be so tired. I've made excuses and obfuscated and lied to people. But the last few months, I've learned to be honest about my capacities and so far I've received much more support and understanding than previously. I thought I was protecting people from my illness, but I was really telling them I didn't trust them enough to be honest. A huge cloud of shame has lifted. I no longer feel stupid and like a weak person. I feel able to stand up and say how ill I am.
And that is why I have written this (long) piece. I want to be able to stand up and say something about moderate ME/CFS and current treatment and the possibility of improvement because I haven't seen it anywhere else. I've been reading about treatment for ME/CFS for years and only hearing negative things and it put me off asking for help. I understand that I am very very lucky not to suffer as much as some people do, but only hearing about the most severe cases with this competitive air was one of the things making me repress my illness. I have lost count of how many times I've been smacked down or dismissed by people with ME/CFS on Twitter for (small voice) saying 'I can do this' or 'I am one of the 25% of people with this condition who don't have regular pain'. It made me feel like a fraud just as much as the people who cast an eye over you and say 'but you don't look sick...' It made me feel my experiences weren't relevant or important and that I was letting everyone down by seeking treatment they all pooh-pooh. And it depressed me to never ever read anything positive about life with ME/CFS. I needed to hear that there was a glimmer of hope somewhere out there and I hope that someone else who feels the same will find this post and see that there is occasionally some progress for some people.
I've struggled to write this as I don't want to sound like I'm blaming or bullying people who are seriously ill. That is not my aim at all and I know how damn difficult it can be to live with chronic illness. i also know that many people with ME/CFS have horrific traumatising brutalising experiences with medical professionals and that they have every right to speak about those and that their experiences are not the same as mine. I also know that many ME/CFS sufferers feel unfairly maligned by press coverage of the tiny extremist faction who have challenged medical professionals aggressively over the insistence of only treating the mind despite the body being ill and not researching the condition properly and I don't want to feed that fire. But I do feel rejected and unsupported by the majority of the ME/CFS community I have looked towards while seeking help and I think as that's my experience, it's a valid thing to say. I don't expect to get piles of abuse, but I also don't want to upset anyone and I apologise if anyone feels that way.
But I started writing this blog as an account of how i was rebuilding my life from rock bottom and it would be a notable omission not to mention the improvement in my physical capabilities as well as the mental health treatment I have had. Feeling more confident in my physical self has improved my mental state immensely. I've moved away from my hugely unsupportive GP practice to a new friendly and helpful one. I've seen the dietician and identified some food sensitivities and have a gastroenterology appointment for the rest that I've waited 6 years for. I've been able to work two days a week semi-regularly. I've started tackling my eating issues better and feeling better about my body after years of hating and resenting it. I see my friends more. I'm writing elsewhere and getting out more and trying new stuff. I've been able to do my own benefits claim instead of feeling I don't deserve it. I can now tell Lord Freud and co from experience that all the telling yourself you aren't ill in the world does fuck all squared. I'm more confident and feel less separate from society. And I'm not cured. I'm still sick. I'm just currently feeling more able to managed my illness. That doesn't mean I won't relapse or crash in the future. I'm just enjoying the respite while I have it.
Edited to add: this piece explains well why many people with ME/CFS feel angry about medical progress and press representation without tapping into that competitiveness I feel so isolated by.
Tuesday, 21 August 2012
Eight years ago today, my whole life changed forever as I was raped for the second time. I can't tell you much about the events as I know little more than I did the next morning. It appears that after dinner and drinks with a close friend, my drink was spiked and I was raped while unaware of what was happening. I don't know where it happened, I don't know who did it or how many people were involved and I have no details. Part of that is down to the fact that my memories of it are completely gone and part is down to the fact that the friend who was with me lied about the whole thing through her teeth and the rest is down to the fact that the police failed in every possible way to investigate it when I reported, preferring instead of go off-road rallying* and generally rearrange the deckchairs on the Titanic.
One of the things that changed the most for me when I was attacked the second time was my overnight immersion into the world of rape culture. Even a rape eight months previously hadn't given me such a baptism of fire because that was the kind of rape that people could pooh-pooh and ignore because I was pissed and when I'm pissed people find me flirty. Plus I was alone in a room with him and I sort of knew him and I wasn't a virgin and I'd drunk alcohol before, so it was fine. I was totally asking for it and it was all bullshit anyway. As taster courses of rape culture go, it was up there but I was too busy sobbing all the time and being homeless to see the societal message. And of course, I thought the same as them. It never occurred to me to blame him for being a rapist, only myself for being there. Self blame is very common after sexual violence and when everyone around you seems to share the point of view, you don't think to query it.
But my second rape was different. By society's standards it was a 'proper' rape, real 'rape-rape'. It featured strange men, alleyways and violence. My garments were rended. Other men rushed to my honour at one point. Apart from the distinct lack of smelling salts in Soho, it was textbook and I was (after my initial failure) now the right kind of victim. I took myself to the police and asked for help at the blackest, bleakest time in my life and instead of cradling me protectively against the Big Bad Wolf, they dropped me from the top of the beanstalk. My prior lack of virtue tainted even this 'right rape' and I was of no interest to them. They made this clear to me by focusing hard on other cases of more deserving victims and winning awards for them at the same time they said they couldn't do their job on my case. More than my rapist, they made me feel like damaged goods as I had to literally beg for help, but the more I did the more they realised I wouldn't be as pliant for them as I had for my attacker and they didn't like the challenge.
It shocked me to my core. Until then I had no real idea that women faced these kind of challenges and prejudices when they tried to report a very serious crime. I'd heard a few mutterings, but had naively assumed those women were the minority. The one woman I knew who'd been raped up til that point had had a fantastic experience with the police despite not getting a conviction and her officers remained in touch for years afterwards offering support. In my bubble where I knew bugger all, I thought that was the norm. It was quite the eye opener to discover otherwise. Frustrated by this lack of support, I felt compelled to speak out about being raped as if the more people I spoke to, the more I would realise the naysayers were the minority.
Sadly it took years to find people who were unconditionally supportive and in the meantime I filled my rape bingo card twice over. I heard the myths repeated, my character assassinated and found wanting in a myriad of ways and yet each comment and cutting remark educated me as to what other women were hearing and had been fighting against for years. I got a good education in the culture we have that pays lip service to the idea that rape is a 'very bad thing' but fails to do much about stopping it or punishing it. It's one of the things that's kept me determined to to do something (anything) and one of the most difficult things I've been through, helping as it did, compund the original traumas. It was liked I'd skipped rape culture 101 and gone straight to PhD level.
Unfortunately this week is the perfect introduction to rape culture. We have Julian Assange preening on a balcony and twisting himself in knots as to why he's above going back to Sweden to answer allegations of sexual assault and rape. Tonight one of his supporters named one of the accusers live on Newsnight and then justified it by saying his wife is a rape victim so shrug, he can do whatever he wants. Ignoring the fact that quite a lot of men have wives who are rape victims because they are ones who raped them, this is simply outing two women for the price of one and is a dangerous precedent since many men will know a close relative who has been raped and may think it gives them carte blanche to do whatever they like instead of think about the person involved (see also my old friend Naomi Wolf who reared her head again.)
We also had George Galloway insinuate that Assange was only guilty of 'bad sexual etiquette' and one didn't have ask permission 'prior to each insertion', leading me to think that Galloway is the kind of man who thinks as long you ask if you'd like them to be the cat, they can get away with anything. He's reduced rape to something as minor as keeping your socks on or hogging the duvet. But at least he didn't try and bend scientific fact like Todd Akin who insisted that in 'legitimate rape' a woman's body can do something nifty to prevent a pregnancy. He didn't elaborate if he thought the human cervix was really like a heavy pair of curtains on a stormy night or if rapist's sperm is different and can be turned back at the door like it's got fake ID, but frankly, I don't know how he'd have sounded more stupid. Thank god Obama had something vaguely sensible to say in return and so did the amazing Shauna Prewitt who did get pregnant after a rape.
This rape apologism was all just in the past 24 hours, but we've also had Tony Benn waffling on about non consensual relationships being different to rape, Ken Clarke rating rapes on a handy chart of seriousness, Ched Evans' victim being repeatedly named on Twitter under the justiceforched hashtag and women who opposed this being banned while Ched's crew stay in the game no matter how many rape threats they issue. The Reddit rape thread was ignored as a learning tool and still written off as lies even though it was men doing the describing for once. The big punchline at Edinburgh is rape and violence against women. No wonder rape reporting is down in this climate of intense justification, disbelief and lack of anonymity. We're going backwards.
Part of me wishes I'd had a bit of a background warning of what rape culture would have in store for me when I was reporting, but part of me knows deep down that I was only able to do it because I had no expectations to scare me. It was so hard to do when I thought everyone would believe me. I couldn't have done it if I really thought the authorities would doubt me. I'd have stayed quiet and although ultimately it wouldn't have made any difference to my rapist, it would have eaten away at me. Words are my defence and solace and to be silenced as well would have broken me in a way that everything else hasn't. I worry that the Assange fan boys and ill informed politicians and those who name victims after a conviction are shouting victims down and silencing them where their attackers couldn't. This is the consequence of a culture that only takes rape seriously if it and its victim tick all the boxes. It's imperative that we speak up and that we don't just leave it to the victims to do it. This is the one time when saying 'my best friend is a rape victim' does count if you're offering to be an ally...
*This is not a weird policing euphemism. My investigating officer took six weeks off to go rallying in Australia, leaving my case at the back of a drawer mid investigation. At least when he was on another continent, he wasn't faking the paperwork...
Saturday, 4 August 2012
This may come as a shock to some people who are full of biological tickings, but I genuinely don't want kids. I just can't picture myself either pregnant or a parent and to have kids you have to do at least one of those things. At the age of 33, I've never felt any desire for a baby. A good friend had her first daughter in March and she's brilliant. I've spent a few lovely afternoon rocking this tiny trusting little thing to sleep and hearing her snuffly little breaths as she succumbs. I've also handed her back and not felt any yearning to have one of my own. My ovaries haven't called out to me at all, just lain there as sleepy and undynamic as the rest of me.
Because that's the thing. I could want babies as hard as I want. I'm not well enough to have them anyway. My chronic fatigue doesn't really fit in with the rigours of giving birth or months of broken sleep to feed a baby in the night and from what I've seen of babies, they are unlikely to fit my current routine of resting for half an hour each time at 11am and 2pm and 5pm to prevent the incidence of crashing for days of exhaustion and pain. They are also hugely incompatible with the medication I take both as foetuses and breastfeeding infants and having to come off those for 9 months would leave me exhausted by constant pain, diarrhoea and nausea. And nausea is a given. I've suffered from it almost daily for 20 years and take stong prescription anti-emetics three times a day which don't completely stop the nausea, but have saved from the social shame of boaking in bins on the street. These drugs are only allowed for up to 7 days in pregnancy and only for hyperemesis gravida so I'd be cast adrift with just own gag reflex. The thought of nine months of my regular queasiness brings tears to my eyes. Adding in the thought of extra pregnancy related vomitiness and I feel quite distraught, clutching my pill sleeves to me anxiously.
I thought I was doing quite well coming to terms with the balance between biology and life. Although I've not had the desire to make babies so far, I have no idea if it might hit like a tidal wave if I met someone I wanted to spend the rest of my life with, but I've been preparing myself what to do if I end up wanting something I just can't have. I'm probably more in the childfree by choice camp, but I can relate to the childless team too. I might have reconciled myself not birthing any babies, but will I be lucky enough to meet a man who feels the same way or will being ill and unable to have kids cause disappointment there too? Unlike most things you do frequently, you don't get any better at being disappointed. Each little drip of dismay builds a bigger stalagtite of pain. Being ill has already cost me my educational aspirations, a proper career, any chance of a decent pension for old age, friends, relationships, social life and self confidence. It's entirely likely it might make it hard to find someone too, so I find it's easier to just not let youself desire what you can't have.
So when I read things like this catty little article about 'If Maeve Binchy had kids...' rammed full of the same smug insinuation that you aren't a proper woman unless you've had kids, I get a surge of energetic rage. No words irritate me more than 'you're not a mum, you wouldn't understand'. Setting aside the fact that insultingly seems to suggest being a dad is inferior to motherhood, it's also utter horseshit. Some people find that becoming a parent changes their emotional landscape and they have a vulnerable side and a sense of feeling they never expected. It's kind of inevitable that having kids is lifechanging, even just practically. But it does not give you the monopoly on emotional intelligence and feelings and it's both wrong and privileged to say it does.
Plenty of people get to understand life and themselves on a higher level long before they have babies. Some learn from childhood as difficult but not unheard of things happen like losing a parent or sibling or grandparent occur. Abuse and bullying teach children an adult view of the world and their own vulnerability they shouldn't know so early. We experience commitment and pain and loss and achievement through our teens as we study, work, fall in love, build friendships and have life change as we grow up. Adulthood brings more life experiences for most people as often your role as a child changes to an adult who cares for other family members and you see their vulnerabilities and needs and find a way to balance them up with your needs. Life happens with all its ups and downs and many people have responsiblities for themselves and others. Divorce, bereavement, family breakdown, ill health, rape and mental illness has taught me plenty about myself and " the feelings of intense vulnerability..., passionate love, joy, bewilderment and exhaustion" women can experience. If you haven't encountered or thought about these things before you have your first child, I think you're either having babies far too young or you've lived a emotionally sterile life and you're the one who knows little.
"No matter what your experience of adult love, there is nothing as strong as the bond between a mother and a child" says Amanda Craig, missing the point that most people will have been the child in that mother child bond before they become parents themselves and must fundamentally know a fair bit about its power and emotion before they start the bond anew. For her statement to make sense, she must be prizing the mother part of the bond more and even then putting the caveat of biological motherhood to keep out the riff raff who didn't give birth as if that's somekind of velvet rope we must all clamour to stand behind. To me you cannot exalt motherhood by leaving out those with maternal instincts. Plenty of women who haven't given birth to a particular child mother them. There are legions of grandparents who sacrifice their retirement to help raise grandchildren, childless aunts, relatives, stepmothers, godmothers, family friends, adoptive and foster mothers who love the children in their lives unconditionally and offer huge sacrifice and engagement over the years despite a lack of a mother child bond borne of birth. These are the women elbowed out by the change from Mothering Sunday to Mother's Day and pushed further to the sidelines by women such as Craig painting such a narrow picture. And that's before we look at the lack of men in these kids' lives that this diktat creates.
Craig is crass and childish in her article. Not only was it published the day Maeve Binchy was buried and used as a dig to suggest this warm wonderful woman known across the world but deeply loved in Ireland was somehow personally and professionally lacking, it came across as Craig attempting to show off. The whole thing could be read as 'look what I've got!' and it is spectacularly charmless. I imagine Craig to be a 'smug mummy' after reading this, that breed of woman who becomes subsumed in her children to the point that she no longers functions as a separate person, relegating everyone else to bit parts and orbiting round her offspring. I admire the commitment, but in the same way that I question being zealous elsewhere in life, I don't think it's particularly healthy and I think that in defining yourself entirely in relation to another person instead of yourself it is the opposite of "bring[ing] about a deeper understanding of human nature" but a way to narrow your horizons.
But what would I know? I've never used my womb for anything apart from storing some hormones and plastic and my ovaries have been on sabbatical since 2001. Craig insinuates that I and my ilk have achieved nothing and are silly and shallow. One of my dearest friends is due to give birth to her first daughter next month and I am ridiculously excited, planning to fuss over her all her life and show her that love and support also comes from people who aren't related to you and that its an achievement and a valuable life skill to be able to charm impress the majority of the planet you aren't biologically connected to. I won't be passing comment on her mother's parenting skills and she won't be passing comment on my lack of them. We'll probably have much more time to do stuff that way if we join forces instead of trying to split society like Craig insists on attempting to do....
Sunday, 29 July 2012
Trigger warning: This post deals with the Reddit thread featuring confessions of rape and my responses to it. Please be aware of that before reading either it or linking to the original thread. I really really debated whether to publish this or not in case it ended up being more triggering than the original thread. But I decided to after reading this piece on the Guardian today where a majority of people decided to disregard the information because it's not the right kind of site (where have we all that line before?) to talk about it on, leading to a situation where they don't believe what victims say about rape or self confessed rapists say about rape so keen are they to pretend rape isn't an issue. I think the thread is genuine. It's too similar to accounts I've heard and read from victims and I just don't feel it can be brushed aside so easily. I decided the opportunity for education was there instead of just going 'la la la' a lot. You may decide this is an excellent opportunity to go make tea and eat cake instead. You know what's best for you.
Friday, 27 July 2012
This week we had deja vu when West Mercia police popped up with their cliche campaign saying the same old 'don't drink too much or you'll do something you regret' message. This is incredibly offensive. I didn't actually do anything when I was raped, except try very hard to stay alive and contain the immediate suffering. Being raped is by its very nature not an event you are active in. It's passive, because you don't want it to be happening. Therefore telling me not to do things I'll regret in this context is like telling the wind not to blow.
And regret is not really the word I'd use about rape. I regret wearing shoes that make my feet look like trotters. I regret that 90s purple iridescent lipgloss from Miss Selfridge. I reget nipping to the loo, missing the nightbus and having to wait 40 minutes. Not once in the 8 years since I was raped and I've lain awake at night riven with misery or trying not to cry, has the word regret seemed adequate. It seems too meek, too minimising. The fact they've used the idea of 'regretful sex' and rape in the same sentence just heaps insult upon injury.
Regretful sex is no bloody concern of the police. Waking up and realising the hot guy from last night actually wears loafers and has a cuddly golf club on his bed does not need 999. It needs lots of tea and a self deprecating anecdote with friends. Going on highly scientific discussion with friends, regretful sex has usually become amusing by the time you've left the situation and had a shower. I'm still waiting for the moment I find being raped even remotely titterworthy. There's no correlation between the two and it's extremely detrimental to suggest they go together as if rape is just sex you regret a lot and not an actual criminal offence with serious consequences.
It's the kind of myth that mutates into victim blaming on juries especially and like everything else about this campaign, it ties into the idea that rape is something that happens because of alcohol and because a man and woman were left un-chaperoned after being out and 'he said, she said'. It ignores the fact that most rapes do not happen like this and that 80% of rapes happen with someone you know and that you're most likely to be raped in your own home. And for all the 'victim warning' that these campaigns profess to offer they actually leave women more vulnerable in many ways because they teach women to look for rape in only one aspect of their life, but not to say 'it was rape' when their ex demands sex when he comes to collect his CDs after you've split or your new squeeze refuses to use a condom and keeps going or your husband hits you unless you agree. Instead of being able to clearly identify those scenarios as rape, women blame themselves, feel guilty and stay frightened and unable to speak out at all, often remaining trapped.
But being raped 'the right way' according to these police posters, still isn't a guarantee that you'll be taken seriously if you've committed some kind of infringement according to their helpful list. Partly because it's been knocked into me since I was about six to be careful because I'm a woman and partly because it seems natural, I did everything on that list on a night out. I didn't drink while stressed or tired, I ate a meal, I ordered a glass of water, I didn't leave my drink unattended, I drink incredibly slowly anyway and I'd planned my route home in detail. I was still raped. Because the barman spiked my drink. In fact he spiked my glass of water. If I'd quaffed my drinks a bit faster, not bother to rehydrate and just drunkenly lurched to the bus stop, I'd have been fine.
Actually rehydration is my nemesis. I was making a cup of tea the first time to make sure I didn't wake up with a headache after a few drinks in my house just before Christmas when my rapist snuck into the kitchen. We all thought he'd left, everyone else had gone to bed and it turned out he'd been hiding. I was only up because I was waiting for the kettle boil. If I'd merrily staggered down the stairs to bed singing Santa Baby and keeping everyone up, I'd have been fine. But that peppermint teabag put a target on my back and the quiche I'd had for dinner didn't protect me at all in the end. I was still raped.
Of all the women I know who have been raped (and sadly that's quite a list), none of them would have been helped by that checklist or the knowledge of self defence. Even the two who had been drinking enough to admit they were quite pissed wouldn't have been helped by alternating their drinks or planning their taxi route, because they were asleep when they were raped anyway. The only thing that would have kept them safe is if their rapist had kept himself to himself. The same with the women who took John Worboys' cab because they didn't want to risk an unlicensed mini-cab or the woman who asked a friend of their boyfriend to give them a lift home because she thought it would be safer than walking alone. Being drunk may make your reactions slower, but in my experience, rapists don't actually give you that much warning they are going to rape you. It's a crime that relies on surprise and fast reactions don't always save you. For every sober reaction where self defense floods back to you and adrenaline makes you superhuman, there is the secret response no one ever mentions.
Humans don't just respond with fight or flight. There's also freeze. Sometimes the human brain in its primitive self preservation state tells you that you can't out-run this sabre toothed tiger. You've just got to go still and hide in the undergrowth til the threat stops. You have no control over this. Your body and brain take over and do this because it's the best way to stop you getting physically hurt or dying. It's just another way to protect yourself and it's totally normal. I'm never usually backwards about coming forward when I am displeased and expected I'd scrap like a mad March hare in a bag. Instead I completely froze. Even though it probably saved me from really serious injury, I blamed myself for years for not fighting back because I thought I'd done it wrong.
And that's the problem with these police campaigns. They read like an etiquette list as if there's a correct way to be raped rather than rape being wrong. Victims measure their reactions by these lists. Juries make their decisions based by them. The police and CPS investigate to certain standards because of these lists. And rapists get given a handy cheat sheet of how to spot a suitable victim. Some women are more vulnerable, especially former sexual partners, sex workers and women with mental health issues or disabilities, but these 'don't drink' campaigns don't teach them or the people round them protection, they just seek to highlight ways that can be manipulated further. It reinforces the idea of the 'right rape victim' and reduces the idea of rape to sex when most people know it's really about power. By making it seem like an inevitable consequence of a night out it diminishes the severity and hides it behind the bogeyman of 'drinking'.
Drinking actually means bugger all as a statement of fact. Saying a rape took place after drinking tells me nothing much. Who was drinking? Was it the attacker or the victim or both? How much where they drinking? Where they drunk? If I've had a glass of wine with dinner and then get the bus home, walk through my estate in the dark and am raped, it could still be said I'd been 'drinking', but it doesn't really add any information. Just using that word doesn't mean I was roaring drunk and gusset up in the gutter but it's often said in such a way to attribute blame as if when women are drinking it means being incapacitated, but when men do it, it's normal. It's just another tactic like like the newspaper telling you what colour hair a rape victim has to belittle the event and make victims seem like statistics rather than people.
The statistics that count are the conviction rates and that's where the police should be focusing their efforts. West Mercia (on the most recent figures I could find, dating from 2007) have a conviction rate of 4.5%. At least South Wales, who ran a similar campaign last year, are at 7.1%. I'm not suggesting that the police don't try and prevent crime before it happens. That's common sense after all. But I suggest they take a tack like the 'Know the Difference' campaign running in Lambeth, South London which addresses the potential perpetrators and their peers with a non judgemental ad campaign about a variety of sexual violence outside the home displayed on public transport, licensed premises and outside clubs and pubs. It combines it with training barstaff, bouncers and police in the nuances of rape and consent. This has been combined with new facilities for women needing help, sits along a council campaign about gendered violence in the home and has resulted in reports being up a third as women feel less judged to come forward about rape and sexual assault (which is often seen as less important because of the focus campaigns like West Mercia's have on rape only.)
It might seem a bit insulting to some men that they feel they are being tarred with the same brush as rapists when they would do no such thing, but it opens a dialogue and helps erode rape myths that are so ingrained around women, sexual violence and alcohol that even the government funded Criminal Injuries Compensation Authority routinely docked women's pay-out after rape if alcohol was involved until a just few years ago. Keeping those myths going and suggesting that women wouldn't be raped if they just tried harder to stick to these lists however is a much bigger injustice and one that destroys many women's lives and prevents rapists from being punished properly because women fear repeat victimisation on reporting. Women can't do anything about being women so we need to tackle the societal changes around rape instead and make change that way.
*This post originally appeared at The Vagenda in rebuttal to a previous less favourably received piece on the West Mercia campaign. They offered me the chance to write something when I complained on Twitter and I thank them for that. The original piece was upsetting, but it's good they didn't go on the defensive and allowed for a piece to educate.
Posted by gherkingirl at 17:07
Sunday, 22 July 2012
I applied for DLA in December 2010. I've been ill and off work since 2003, but some bad benefits advice in around 2005 meant I thought I wasn't eligible to claim DLA that whole time. While that led to me losing out a lot of financial support, it was probably also the catalyst for wanting to become a benefits advisor and make sure other people don't get caught by poor advice. I'd made the classic mistake of thinking I had to have carers to get DLA rather than being made aware that it's about your need for care, rather than the actual provision of it that qualifies you for the benefit.
After some job training about other benefits, I realised I fitted the criteria and got a form. Slightly daunted by the size of it, I got out my favourite pen and started filling it out in my best handwriting, thinking how hard could it be? Turns out, if you aren't blessed with government department bureaucracy style thinking superpowers, attempt to be positive about your conditions and your life and don't usually have someone to help and thus can't picture how that would work, it's akin to trying to make the Enigma machine singlehandedly using two bog roll middles and a cornflake box. The form is a masterpiece in asking a question one way and expecting the answer another. I ploughed through it, making all the classic errors everyone else does when they see one for the first time, especially if they have mental health needs as the prompts are all physical related.
I said I didn't need help with my medication because I didn't take psychiatric medication, but didn't know to say that I didn't take them because I couldn't cope with them, couldn't get them easily due to my agoraphobia and because of the horrible side effects. I said I had no night needs because I didn't need anyone to physically help me into bed, not realising that i should have mentioned not being able to sleep without the TV on or the nightmares and reliving of PTSD. I didn't explain how someone could help me day to day because I don't have anyone to do it. I just wrote down what I thought I needed and felt like I'd been hit by a truck doing it. Seeing my life in black and white almost reduced me to tears at a time when I was being taught to be positive about it. I did the form wrong and it was still one of the hardest things I've done.
Surprisingly enough they awarded low rate mobility as I need someone to guide me when outdoors due to agoraphobia, but said I had no care needs. Thrilled to be around £20 a week better off and passported to other things like a Freeview upgrade and some help with energy bills (this depends on your supplier), I didn't query it. I started my volunteer role and began learning how to fill out DLA forms like a demon. 8 or 9 months later, able to fill out a full form in under an hour and half and not having had a single case turned down or need to go to appeal, I realised I was missing out because I definitely fit the care criteria myself. I asked for a review form to do a supercession and see if I could get my award altered.
Taking more than 4 hours to do it, I girded my loins and waded into the world of being honest about how crap life is most of the time. I backed it up with prescriptions, social worker reports, Community Mental Health Team reports, a full psychiatric report from from a psychiatric hospital, two letters from therapists and medical notes in some cases going back 15 years. They turned me down. I appealed. They still turned me down. A tribunal was the only way forward.
The waiting list for tribunals is evergrowing as both Employment Support Allowance and DLA awards seem to be modelled on finding the Higgs Particle. I asked for mine in October 2011 and it was set for 12th July 2012. Technically this gave me ages to collect further evidence for my case, but in reality meant I just sort of forgot it was happening because it was so far in the future. The one thing I did in that time was after discovering the inaccurate, incomplete and biased report my GP submitted to DLA was move GP to one who doesn't think I'm a big malingerer. Unfortunately I dithered about if for so long I ended up doing it too close to the tribunal and put myself in a situation where my new GP doesn't have my notes and couldn't write me a supporting letter.
Trying to comfort myself I'd saved up £45 on that at least, I gathered up the evidence to show my condition had worsened and that I had had to be referred to specialist services and found someone to come with me. I needed someone reliable and able to balance practicality with being comforting and who wouldn't look horrified by the details of my life I usually prefer to keep hidden. Turns out I am lucky enough to have a choice of people to ask, but it had to be my friend A who asked where was good for lunch nearby and gave me something else to focus on!
I sat down and went through my appeal bundle, sending my supporting evidence back to them by recorded delivery and picking out where the DWP were wrong or had ignored evidence or points of eligibility. Three A4 pages of detailed notes later I felt ready to take on the world. I spent more time choosing what to wear, eventually going for the obvious choice of what I would normally wear when I left the house. For me that included my mask of make up and I made a mental note to explain the healing power of eyeliner to them. We made our way to Holborn in good time and I realised I was actually incredibly unpleasantly overwhelmingly anxious (seriously, after 8 years this still surprises me...)
Greeted by a receptionist who resembled Dolly Parton crossed with the duffled coat dwarf in Don't Look Now who was annoyed I'd forgotten my letter, my first reaction to the tribunal was to run far far away. A quick trip to the toilet reminded me it would be awkward to explain to A why I'd pissed off and left her in a waiting room, I went back. The clerk of the session came out and introduced himself and the panel. I'd been expecting 2 on the panel, so was thrown by the fact there are 3. You get a doctor, a tribunal judge and a disability expert in a DLA tribunal, but only the doctor and judge in ESA tribunals. I barely had to wait before we were off down the glass corridored rabbit warren and delivered to a large bright room with 3 people waiting.
Pleased to see one was a woman, they explained that they are independent of the Department of Work and Pensions and are from the Ministry of Justice. They outlined the judge was there for fairness while the doctor would ask about my health and the disability expert would assess how the law of the benefit fitted in with those answers. And we were off. The female doctor started and I found her pleasant with an air of neutrality but just enough interaction to be aware she was human. I did find it odd that she asked me about all my illnesses and conditions, except the PTSD and everything seemed swerved away from that elephant in the room for some reason I couldn't quite fathom.
I found the questions from the disability advisor harder to deal with, party because he looked just like the coelacanth at the Ulster Museum, but also because it was hard to answer these with my 'sick person' head on than my 'advisor' head. Part of me knew the point of eligibility he was raising and wanted to highlight it, but the rest of me just wanted to kick my heels and complain like a toddler til someone gave in. I was also massively taken aback to start crying when he asked me about my night needs. I've sat and discussed the nightmares and reliving of my rape with plenty of experts over the years, but I've never shed a tear before. It was like being stripped bare and asked to beg. I can't remember the last time I felt so exposed and I really thought at one moment I wasn't going to be able to pull myself back without collapsing.
But throughout that moment and the rest of the hour long tribunal, the people involved were polite, listened to me without patronising or interrupting and treated me like a person not an inconvenience who fucks up their nice statistics by being alive. They offered me professionalism and allowed me a chance to speak like an adult with a brain in my head. After years of contact with the DWP and Atos, this shocked me and disarmed me. I couldn't read their responses. Where they luring me in? Where they really being nice? I couldn't be sure to trust them and I left feeling unsettled and unable to assess how the tribunal had gone.
DLA tribunals don't usually give decisions there and then, unlike ESA ones and I had to wait until Saturday morning's post to get my result. They awarded me low rate care for two years, backdated to last September and extended my low rate mobility for a further year, meaning the two award lengths match for renewal. It also means I don't have to do my DLA in the same month as my first ESA50 which is a nice bonus. I was originally pleased to see the award, although pissed off that they'd discounted my night needs, thinking I cried for you and you ignored it. But then a sense of profound upset came over me.
I've been sick pretty much constantly for 20 years and still it suckerpunches me when experts agree that I'm ill. I find it easier to say to myself that I'm just not well today than accept I'm probably never going to get completely well again or have back all the things being ill has cost. To see an agreement that I am very unwell in black and white knocked me and made me feel that for every progress I do make, it's really just me kidding myself. I'm no closer to holding down a full time job than I was two years ago. I'm still sick and struggling despite all the therapy I've done and I can just picture myself doing the tribunal roundabout for years to come. It felt heartwrenching and I wobbled all week, only perking up slightly when the DWP paid the backdated amount in my account this week.
Money doesn't buy you happiness. It doesn't buy you health, but it does make it easier to pretend life is normal and for that extra support I thank the tribunal for seeing sense and standing up for us when the DWP refuses to. It's been a long 10 months, but I think I'm glad I did it if only to remind myself what wonderful friends I have and to treat myself to the proper Miss Marple box set I've been eyeing up for years...
(I also like to take this moment to tell the Daily Mail to ram their filthy rag somewhere that means they have to start explaining their toilet needs to someone on minimum wage who hates sick people and see how easy 'just' filling a form in is...)