Jumping Through Hoops

This post is a copy of a letter I've just written to the Department for Work and Pensions, as the latest part of the jumping-through-hoops process called Applying for (and Keeping) Employment and Support Allowance. I may shorten and edit the letter further before sending it, as it is long. It is not a happy post, and does not make cheerful reading.

I've shared it here on my blog, however, because it feels important to do so at a time when disabled people in Britain are being blamed for the budget deficit and, in effect, disbelieved for being ill. By the government and by newspapers, they are labelled as workshy scroungers. In reality, many chronically ill people are being made more sick through the prolonged stress and anxiety of rejected applications, humiliating medical assessments, nerve-wracking tribunal hearings and more. In my case, even having had my appeal successfully heard by a tribunal is proving to be far from the end of the story. I am fed up, depressed and very angry. And yet there are others who need their benefits even more than I do, who are suffering more than I am. This awful situation has already led to many becoming homeless and at least one preventable death.


ESA is a hideously complicated benefit, and to clarify the bit near the beginning re the two components: the reason I'm asking to be considered for the support component of ESA, is that if I'm on the work component alone I will not get any more money after January 2013. If I'm placed on both components, there's a chance (although this is not guaranteed) that my payments will continue.


If, before, after or instead of reading this, you would sign the following Avaaz petition, I will consider this posting well worth it.

https://secure.avaaz.org/en/petition/Stop_stealing_disabled_peoples_benefits

Many thanks.

11 June 2012

To whom it may concern

My partner spoke to one of your advisors on the telephone on 8 June 2012, to discuss why I have not been placed in the support component group of Employment and Support Allowance. A tribunal I attended last month allowed my appeal against your earlier decision that I was not eligible for ESA, but they said only that I was eligible for the work component. The advisor last Friday explained that I would be considered for the support component as well, if I submitted evidence that my mental ill health (anxiety and occasional depression) also affect my ability to work, and not just my chronic pain condition.

I am therefore writing to you to explain more about my anxiety and how it affects me. You will also be receiving letters from my partner, my GP and my counsellor on this issue shortly.

As far as I’m concerned, my chronic pain condition (neuropathic pain) is already severely disabling, in that it affects my ability to sit upright, stand or walk for more than short periods. I believe (and the tribunal evidently agreed with me) that I would be unable to hold down a job, considering these disabilities. However, my anxiety is also a major issue and would greatly impair my ability to cope with a job, especially as it is often triggered by flare-ups of pain. I would like first to explain something once more about how my chronic pain affects me, because this is often a cause of great anxiety for me.

One of the main difficulties I would have in a work situation, would be pacing my activities so as to avoid these major distressing flare-ups of pain. At home I have to pace myself constantly in order to avoid these flare-ups, which can be incapacitating and cause great distress, often triggering anxiety or low mood.

Pacing myself involves regular and frequent rests after any activity that involves sitting, standing or walking. This would be extremely difficult if not impossible in a work setting, and from long experience I believe that flare-ups would be frequent and inevitable. I would therefore need to take time off sick on a frequent basis. Flare-ups can sometimes last for weeks or months, which would obviously be impractical if I was working.

With regard to sitting times, I can usually sit comfortably for no more than fifteen minutes, not thirty minutes as stated in the assessment. I can usually stand for only a few minutes without rapidly increasing pain. During flare-ups, sitting for only a few minutes can be very painful, and standing is correspondingly more difficult too. The need to pace myself by sticking to sitting and standing is therefore essential for me to avoid such flare-ups.

In order to attend the tribunal in Brighton, my partner had to recline the passenger seat of the car for me, so that the journey of nearly an hour would not trigger a pain flare-up. We do this for all car journeys of longer than fifteen minutes. Similarly, during the tribunal hearing I had to lie on a sun lounger we had brought with us, as there was naturally no reclining furniture available in the hearing room. Wherever I go, I take a couple of cushions with me, so that I can be as comfortable as possible and if necessary lie down in order to prevent and increase of pain.

Other activities also trigger more pain, such as reaching repeatedly for things, or lifting and carrying. These activities are correspondingly more difficult if I’m in a pain flare-up. I can also get pain in my hands from using a keyboard repeatedly or over long periods. In the past I was given redundancy from my job because I had developed a repetitive strain injury in my hands from using a keyboard continuously. I was not able to go back to work for another eighteen months. The pain in my hands can still flare up again sometimes if I write or use a computer keyboard too much.

With regard to my mental, cognitive and intellectual functions, I suffer from anxiety which at times has been very severe, as well as emotional distress when I am in a lot of pain. The anxiety itself began in 2008, when I suffered a nervous breakdown. For several months I was in such fear that I couldn’t function, or even be left on my own for long; my partner had to take two months off work to look after me. I was on very high doses of valium at the time. I had a lot of help from an organisation called No Panic, which runs a helpline, but it still took me much of that year to recover. It was the worst time in my life, and whenever I suffer bad anxiety now the feelings are worsened by a fear of becoming as ill as I was then.

Since 2008 I have had fairly frequent recurrences of anxiety. These setbacks are often triggered by flare-ups of pain or other health problems, many of them quite minor. My anxiety also worsens these flare-ups, by adding extra emotional distress to the distress I already feel as a result of the intense pain. During flare-ups I struggle to manage both the pain and the anxiety, and my GP sometimes prescribes me valium to help with the latter. I don’t take valium all the time, but I do need it to help me through the worst of these episodes.

When suffering from anxiety, I am under such stress that it is difficult to concentrate on learning new tasks, coping with changes, and dealing with people I don’t know. I also feel nervous of answering the phone at such times. The stress involved in such situations tends to feed back into my pain and anxiety, making both worse because I am under such stress. When this happens I need to rest in a comfortable position (ideally, lying down), and practise deep relaxation exercises such as diaphragmatic breathing, in order to reduce pain and anxiety. I also practice mindfulness meditation, but it can still take days or weeks to bring the anxiety back down again.

As an example of the ways in which my anxiety would affect my ability to work, this current situation with my benefits has itself caused me significant anxiety. Receiving the letter which mentioned that I would not receive any ESA payments from January 2013 was a big shock, and as my partner and I did not understand the situation we needed to make several phone calls to the DWP for an explanation of how ESA works. This was so stressful for me that I had to go to bed to try and stay calm, while my partner made the phone calls. I am also very anxious about my interview at the Job Centre on Thursday, to discuss ‘getting back into work’. My feeling is that the DWP still believes I am capable of work, and so the thought of having to explain all this once more to someone I don’t know is very difficult for me.

I have been prescribed anti-depressants since my chronic pain began eight years ago, but I still experience low mood. In 2009 I suffered a spell of deep depression following the onset of a big and debilitating pain flare-up. This depression lasted several months. Even now, I still have to work hard to keep my mood up, as the pain and my inability to do many of the things I want to do causes me such distress. Over the past few years I have had frequent support from Health in Mind (the local mental health team), which has helped me to manage my mood, but it is still very difficult at times.

In a work situation, managing both the pain, anxiety and my mood during a flare-up would be next to impossible, and once again I believe that I would inevitably need a lot of time on sick leave in order to recover. Such times are also emotionally distressing for my partner whom I live with, and whose life includes extra stress when I am suffering in this way.

Finishing tasks is another area that I would find difficult at work. Because I need frequent rests, completing tasks takes a lot longer than it would for someone without my chronic pain condition, which I believe would make it very hard if not impossible for me to meet targets and such.

I can get about on my own if it is to a place that isn’t too far. However, if it is further than walking distance I need someone to transport me in a car or a taxi (I don’t drive). This is because I find bus and train travel too painful, partly because of the seating and also the waiting times. Such travel therefore exacerbates my condition and tends to make flare-ups more likely. My partner works and lives in London for three days each week, so would not necessarily be able to drive me to and from work.

Such difficulties are very common for people with my condition (neuropathic pain or NeP), which is notoriously difficult for people to manage. One of the main problems is that often an activity does not cause much extra pain at the time, but tends to trigger it afterwards. So sitting or waling for too long, for instance, might be manageable at the time. But doing it persistently always leads to pain flare-ups. I’ve learned this through long, hard experience, which is why pacing myself and resting frequently is so important. It is also something that was confirmed on a pain management programme I recently attended at the hospital, where much emphasis was placed on pacing and relaxation as well as certain exercises which help to strengthen and mobilise without increasing the pain.

Part of my pacing involves gradually trying to increase what I am able to do. It is a very slow process, but I believe I am gradually improving in my ability to do certain activities without increasing pain or causing flare-ups. I hope I will be able to go back to work sometime in the future, especially as I greatly enjoyed my last job working with people with mental illness. But that time is not yet. I do not believe I am ready to go back to work, as my condition has not yet improved enough for me to be able to do so. 

Although I would really like to work again, and hope to do so in the future, I firmly believe that working at present would present a huge risk to my health – both physically, in terms of greatly increased pain, and mentally, in that it would almost certainly worsen my anxiety and low mood. I cannot emphasise the latter too strongly. My anxiety seems so closely tied to my physical health – my chronic pain in particular – that any increases in pain as a result of work, not to mention the stress of the working environment, would almost certainly make me anxious and present a risk of another nervous breakdown. At the present time, working would be completely impractical for me – and I have previously sent you letters from my GP and counsellor advising you of the same.

I hope that what I have said here, as well as the other letters which will follow, will give you a better idea of how my condition affects me and help you to make a decision which reflects this. I believe I am fully deserving of both the works and support components of ESA, and am asking you to award me the support component because of the extent of both my physical and mental difficulties.

Finally, I would like to add that this ongoing situation of having to defend my claim for ESA, is causing me great emotional stress. Almost every day now I am anxious and worried about my claim, and my mood is often low. I have already suffered eight years of physical pain and four years of anxiety. I did not ask to be ill, and I would be out there working in the world if I could. And yet, although I trust that staff at the DWP are trying to help me, the process is making me feel powerless and stigmatised. These are not good or safe feelings to have, for someone who already frequently suffers from anxiety and low mood, and I am worried about my mental well-being as a result of this ongoing situation.

Please do contact me if you have any questions. I look forward to hearing from you soon.

With best wishes 

When Sex is a Pain

I wrote a blog entry a while ago about sex working, called ‘Safety and Exploitation in the Oldest Profession’. It’s a subject I seem to have different views about from my other liberal friends; perhaps because with trafficking and slavery being so rife, it’s becoming easier for people to generalise about exploitation. In the blog I mentioned briefly that one of the legitimate uses of sex working was to provide sexual experiences for those who cannot find them through the ‘normal’ channels. This includes the disabled, who can often find it very difficult to find sexual partners or even to have sex ‘normally’.

Although I didn’t develop that theme, it got me thinking about my own difficulties with sex, caused by my chronic pain condition which began eight years ago. I have never seen the issue of sex treated adequately, or even at all, in books about chronic pain, no matter how excellent they are in many ways. And this is strange, because sex or the absence of it is a very important part of most people’s lives. The difficulties that chronic pain and illness cause for people’s sex lives are very significant, and can cause great distress. I know I’m not the only one who is affected by this. So I decided, with the encouragement of a friend who is writing her own blog on the subject, to discuss the issue here.

In brief, here’s my own experience. Without going into too much detail, my chronic neuropathic (nerve) pain is centred mostly in my groin area, and is exacerbated by simple activities such as walking, standing or sitting for too long. I have to pace myself with all these activities, neither of which I can do comfortably for more than a few minutes, most of the time. So you can imagine what sex does to this painful condition! (which at its worst, is very painful indeed). Sex has to be timed carefully for when I feel at my best. It also tends to be brief, careful and somewhat inhibited. My partner and I still have a sex life, but it’s much less frequent and obviously not the same; neither as satisfying or excited or uninhibited, as it used to be. Both of us very much aware of the possibility of flare-ups, our enjoyment is tempered by a continual effort to be careful and avoid any lasting increase in pain.

Since being in pain, I’ve also felt a gradual but not total loss of libido. It may be partly the medication I’m on, and it may also be that I’ve adjusted to not experiencing sex as often. But I also think (and other sufferers have said this to me as well) that when we’re suffering we don’t feel sexy. During flare-ups, I feel less like a man and more like a child, because I feel sad and vulnerable and in need of ‘looking after’. It’s aggravated by the fact that I often suffer anxiety during these times, which makes me feel even more vulnerable. All this greatly changes the nature of a relationship.

I think when we’re sick or suffering, the need to get better or to be in less pain becomes an over-riding priority. Other needs take second or third place. I guess, in evolutionary terms, this makes sense. The need to reproduce is of paramount importance to all animals, but we need to survive first if we’re to be able to have sex! When we’re suffering, we go into fight or flight mode, and from the point of view of our nervous systems, our survival feels threatened. So sex, along with many other human and animal needs, feels less important. Recovery, or feeling better, feels all-important.

Perhaps this why I (and other people I’ve spoken to) feel an increased need for physical affection, even while our libido is reduced. Because we’re suffering, we need love, reassurance, and ‘holding’. We need comfort and cuddles more than we need excitement. We feel a bit more like a vulnerable child, and a less like a virile adult.

When I can afford it (which isn’t often!), I treat myself to a professional back and shoulders massage. This is very nice, a beautiful sensation, but it isn’t exactly sexual! It creates a much needed relaxation more than it does arousal. For this reason, it seems to have more in common with the gentle reassurance of ‘affectionate’ touch than it does with sex. There’s no love there, but its effect is calming and reassuring, and only little bursts of intense pleasure relate it to sexual excitement.

There’s another aspect to sex and chronic pain or illness. Because sufferers can be disabled in varying degrees, it can also be difficult to ‘find’ sex in the first place. I know that if I wasn’t already in a relationship, it would be very difficult to meet potential partners (I never found it that easy anyway!), or to find someone who could be patient enough with the sexual difficulties my chronic pain leads to. Who would, in short, be willing to forgo a fully-active sex life herself. And I’m lucky; I’m far less disabled than some! Some people find having ‘normal’ sex impossible, and yet they have the same desires and needs. Where do they go?

In response to my article on sex working, a friend sent me this link to an Australian newspaper article: http://www.adelaidenow.com.au/news/south-australia/disabled-deserve-sex-rights/story-e6frea83-1226310720177. The majority of this article concerns one woman’s attempt to get the law changed, to provide government funding to allow the disabled to visit sex workers – and so have sexual experiences that would otherwise be denied to them. But what struck me, and touched me the most was the quote from the Adelaide sex worker at the end of the article: "It's often a long time since someone (with a disability) has been touched in a sensual way," she said. "I'd really like to see a time when we can speak about it openly."

I find this very moving. We all of us crave touch, and sensual touch is very special. Even though I have a (limited) sex life, I found myself instantly relating in a powerful, emotional way to that sex worker’s words. It’s a reaction which tells me that, even though sex and physical affection are not absent from my life, I have needs which are greater than the part being fulfilled. I haven’t had totally relaxed, free and uninhibited sex for the past eight years.

As another friend said to me, all the difficulties around having sex with chronic pain, illness and disability create yet another loss for us to have to deal with. Yet it’s one that, for natural reasons, is very hard for us to talk about with others. I guess I’d like the non-disabled, non-sufferers, to think about this for a while, especially in the current social and political climate. The British government, and the newspapers who support it, are encouraging hostility to the disabled, who are seen increasingly as work-shy benefit-scroungers. This is classic politically-motivated scapegoating; the disabled (and others on benefits) are being blamed for the budget deficit, which they didn’t cause. And it seems to be working; verbal and physical abuse of the disabled is apparently on the increase. But think about what we have lost, and then think what being ‘work-shy’ would involve sacrificing. We often cannot work, and yet our means of basic survival is being cut and many are plunged into poverty or even made homeless. Many can’t walk, or have difficulties walking. Many can’t get out of bed. Holidays, or even a drive out of town, are a no-no for many. Our relationships can suffer, and we can lose friends or even the support of our families. And on top of that, we also have to deal with the total or partial loss of sex in our lives. So many of the things that non-sufferers take for granted in their lives…

One irony is that chronic pain sufferers can probably benefit from a passionate and satisfying sex life even more than ‘healthy’ people can. Sex is one of those things (like other activities, such as laughing and eating spicy food, would you believe!) that releases endorphins – opiate-like substances which are released naturally by the body. Also, pleasurable sensations send messages to the brain from the peripheral nerves, up to seven times faster than unpleasant sensations! So the sheer pleasure of sex can help to block pain signals from even reaching the brain. I presume that this explains why I often hardly notice my pain while enjoying sex, but find myself suffering afterwards. My body is telling me to let go and get carried away, but my mind knows that if I do I may pay for it later. A short-lived increase in pain I don’t mind, but a really big, lasting flare-up? No thanks! And so my sexual experience, despite the physical and psychological benefits of having sex, is diminished – along with that of my patient, long-suffering partner.

It goes without saying that many of these losses, including the sexual ones, are felt by our partners as well. They struggle with us, knowing at close hand what having a chronic illness means for sufferers and their loved ones. Those of us who have understanding partners are very lucky, despite all we've lost. We have the understanding and compassion of those we love the most, and even if we don't always have sex, we have physical affection and love. How much harder for those who don't have that either...

The painting at the head of this article is called 'Bride of the Wind', by Oskar Kokoschka.

Meditative Fish

A woman I studied with on a degree course in the 1980s is now a very fine and successful artist. With her love of nature, almost all of her paintings are of landscapes or animals, and I have a big and beautiful print of hers on my bedroom wall. Entitled ‘Evening at Sweetbriar’, it’s a calm and atmospheric painting of a fishpond, with trees and the rising moon reflected, and two koi carp swimming in the depths below. It’s a magical and, for me, a rather comforting picture.

Last week, my partner Angie and I discovered that a neighbour of ours has a wonderful fish pond in her back garden, and the fish are impressive: large and graceful, some orange and others of different colours and patterns. We took photos of them at the weekend, and behold! – the results are very like Rachel’s paintings. I spent a couple of happy hours editing them on the laptop, and cropping them into pleasing compositions. One of them I’ve posted above, and if you imagine it created in paint instead of pixels, you’ll have a good idea of Rachel’s work.

Working on my photographs is very therapeutic for me, all the more so because like Rachel, I tend to focus a lot on nature and wildlife. Being at home a lot of the time because of my disability, I can get isolated, anxious and occasionally depressed. I have to work quite hard to stay positive, especially when I’m in a lot of pain. So just looking at nature, even if on a computer screen, lifts my mood because I’m focussing on beautiful things. The fact that I’m being creative at the same time – doing my best to create a beautiful thing – helps even more.

There’s something meditative about these new fish pond photos, I think. I need to remind myself to slow down a little, because I’m on a high at the moment after winning an appeal against a decision last year that I was able to work and therefore ineligible for state financial help. Now that all the anxiety and stress have subsided, I want to get out and experience new things – but I also need to remember that my body can only cope with so much. So right now, I’m working on these photos and enjoying the sight of the cool colours, the bright fish, and the reflected sky. Thanks to my camera and a helpful neighbour, I can enjoy these even without having fish of my own.

After this experience, I would love a fish pond in our garden, though. I could sit there and breathe gently, mindfully aware of the ever-changing movement and colours of the gentle scene below me. And every photograph I took would be different.

There’s just one problem: our darling cat Tally. She’s definitely a fisher cat, because she sits on the edge of the bath and reaches for our toes! So I wouldn’t trust her with no fish. She’s too slow to catch insects or birds – although she manages earthworms and the occasional moth. But I wouldn’t be happy to see her jump through the cat flap with a bleeding, chunky koi carp in her mouth. Although judging by the size of some of them in Val’s garden, she wouldn’t need another meal for days…

Sometimes you can’t have everything you want. I’m quite happy to sacrifice a fish pond as long as I can keep Tally!

PS: You can see Rachel Lockwood’s art at http://www.rachellockwoodartist.com/

Self-Compassion First!

This is an extract from a draft of a chapter for my new book, whose working title is, ‘Healing the Second Wound: A Compassionate Response to Chronic Pain and Suffering’. No doubt much of the text will change before I try to get it published. I thought I’d use this part in my blog as a defence of self-compassion, which many people confuse with self-pity or selfishness, believing that compassion for others is only what matters. On the contrary, it seems clear to me that self-compassion has to come first. If we can’t show compassion for ourselves, we are liable to damage ourselves, and then we cannot effectively show it to others either. The example I give from my own life, towards the end, is a case in point.

The Dalai Lama defined compassion as ‘the state of wishing that the object of our compassion be free of suffering… Yourself first, and then in a more advanced way the aspiration will embrace others.’ Buddhism is strong on compassion. One of my favourite quotations from a Buddhist is by Rob Nairn in his book ‘The Tranquil Mind’: ‘The most important thing in all the world is to be kind.’ It’s a simple statement, but true. Imagine how universal kindness would transform the world and its fortunes!

The Dalai Lama’s definition is interesting because it puts self-compassion first, before any compassion we can give to others. This is the opposite of what many of us are brought up to believe from childhood onwards. So often we are taught to go out into the world and put other people’s needs first, if necessary sacrificing our own. Although it’s an understandable belief, an awful lot of guilt is created by this, and a terrible amount of self-punishment and suppression of the most natural basic needs. Sometimes this suppression – which, when it becomes unconscious, is called repression in the Freudian sense – can only allow our thwarted needs to be expressed physically, through pain or illness. We saw in Chapter Four how the effects of trauma can become ‘locked’ into our bodies, but normal tension and stress also have physical effects; often being expressed in the muscles, causing back pain or irritable bowel syndrome. Chronic back pain, for instance, is often correlated with unhappiness or frustration at work, where someone is in a job but getting no satisfaction from it, and constantly under pressure to meet targets or deadlines imposed by someone else. Sacrificing our own needs can become such a habitual feature of our lives that we are unaware we’re doing it. But self-sacrifice, on a regular basis, causes much unnecessary suffering.

Often, if we are willing to get our needs met, such as the emotional and psychological needs which inspire some people to go for counselling, other people may regard us as selfish or navel-gazing. As a counterpoint to the talking therapy industry which is so popular in the western world, there is great hostility to it in many quarters. “Why can’t this person just pull themselves together and get on with it?” people say. I suppose it is possible for some to get addicted to counselling or therapy. But people often have very good reasons for embarking on such a journey: relationship problems or childhood traumata, for instance. Studies suggest that in the United States, between 20 and 25% of women and between 5 and 10% of men were sexually abused as children. Think about that for a moment! Embarking on therapy to deal with these traumata constructively and with self-compassion, takes a deal of courage and some wisdom too. Less constructive ways of dealing with abuse include self-harm (self-abuse) and abusing others. Are those ways less selfish than treating our emotional needs with compassion?

It makes sense to realise that we have to help ourselves first before we can help others effectively. This means that compassion follows on from self-compassion, not the other way round. It’s almost impossible to give attention to others if we’re trapped in our own internal struggles, and likewise we can’t begin to empathise with others – their fears, joys, struggles and hopes – if we take a hard line on our own feelings. Once our own difficulties become workable, we can extend our compassion to others, and truly go out and participate in the world, giving what we can to help others be free of suffering.

A friend of mine who experienced a major and traumatic bereavement, finds it impossible to offer emotional support to bereaved friends; it simply hurts too much. Her counsellor said to her: “You can’t give what you don’t have.” It’s true! Our own healing has to come first.

In the context of having chronic pain, if we ignore what our bodies and emotions are telling us, we are likely to make our own suffering worse. This depletes our energy and our ability to help others. It will also make life harder for those around us, because they will have to deal both with our emotional distress and our diminished physical capacity. So either way, it makes sense to look after our own needs, and to treat them with understanding, patience and compassion. Not doing so causes problems for everyone, starting with ourselves.

Before I had my nervous breakdown in 2008, I had been putting myself under stress for years, and at the same time berating myself because I still didn’t think I was doing enough for others. In my case it was anti-war campaigning that did the damage. I cared passionately about the suffering of millions of people in other countries, was beside myself with frustrated anger at the politicians who caused such suffering and lied to us in order to justify it, and was fearful of where such developments would lead us in the future. So: I was upset, angry and scared. I focused on these issues almost continuously, but because of my chronic pain condition I couldn’t get out into the world and campaign as actively as others. Neither did I, like friends I knew, put myself on the line by non-violently breaking laws that criminalised peaceful protest. Nothing I ever did was enough. I was pushing and pushing and pushing myself to campaign harder, despite being afraid and in stress already due to a chronic pain condition, and I certainly wasn’t treating myself with compassion. Is it any wonder that my nervous system, without the buffering of anti-depressants that I’d recently withdrawn from, finally seemed to decide it had had enough?

Trying to help the bombed and traumatised people of Iraq and Afghanistan, while not taking care of my own basic needs (including the need to feel safe), is a fairly extreme example of where non-self-compassion can lead. But I learned about the importance of self-compassion the hard way. I’ve had to learn how to gradually implement it in my life since, and I must say it’s better late than never! My hope is that this book will help readers to learn self-compassion in an easier way, because it really is the first step in managing chronic health problems of all kinds. We can, like the Dalai Lama says, wish ourselves to be free of suffering, ‘and then in a more advanced way the aspiration will embrace others.’

In Chapter Eleven we will look at ways we can extend compassion and kindliness to others as well as to ourselves, as this too is a part of getting well and regaining more of our lives once more. But for now, let’s focus on ourselves, and how we can help give ourselves the compassion that, in our difficult situations, we both need and deserve.

Safety and Exploitation in the Oldest Profession

This piece started as a reply to a letter in my local newspaper, by a Mr Dalton who I know personally through our mutual work in a local peace group. He was effectively condemning the profession of sex working as exploitative, with the workers portrayed as victims and their clients as ‘sad’. He gave examples of the increase in trafficking, sexual slavery and child prostitution as evidence for his assertion that ‘prostitution is exploitation’.

This got me thinking, because sex working is a subject that interests me and one of my friends used to be in the profession herself. While she admits that prostitution is almost always exploitative, her experience was nothing like that portrayed by Mr Dalton in his letter.

Let me say that I agreed with a great deal of his letter, and feel the same compassion for the victims of crime that he mentioned. He’s a liberal and humane man with a deep concern for human rights, which I share. But the letter seems too great a generalisation. It’s as if he took examples from the extreme end of the spectrum, and then tarred the whole profession with that brush. It’s certainly true that prostitution is often highly exploitative, and that there has been a great increase in trafficking over recent years. So the kinds of experiences that my friend had over ten years ago may be rarer now; although I’m sure there will always be honest people who decide to make a living from selling sex. But to state in such a bald way that ‘prostitution is exploitation’ is too great a simplification, and I don’t see that in itself it’s necessarily a bad thing, especially if it could be legalised and the women involved better protected. It’s the exploitation that is wrong, not the prostitution.

My friend, who I’ll call Martha (not her real name) lives and works overseas, in a far less controversial profession; but she used to work near the heart of Soho in London. She wasn’t very happy as a sex worker, although some of her friends were more comfortable with it than she was. Neither of these women were forced to become sex workers, and although they were exploited financially, they felt physically safe and were not abused by those they worked for. They chose to be sex workers, and when my friend was totally fed up with it, she chose to stop being one.

Tragically (and everything Mr Dalton says about the desperate circumstances of many sex workers is true), a huge number of women don’t have that choice. But many do, and their reasons for sex working are as varied as the reasons people choose any job. Neither are they necessarily any more likely to become HIV positive than people with a predilection for one night stands are; in fact, they may even be safer. Mr Dalton’s letter very much overemphasises the danger here, as if there’s something especially unhygienic about having sex with a prostitute. Sure, it depends on where they work, how desperate they are for money, and other factors. But Martha and her friends weren’t HIV positive; they worked in the business for many years, and protected themselves every time they worked. Neither she nor her friends ever became infected with anything.

Mr Dalton’s letter really got me thinking though, because the subject of exploitation, trafficking and slavery is such a serious one. So I asked Martha if she would tell me more about her years as a sex worker, because I didn’t feel I knew very much about it. She sent me the following reply - which I’ve edited somewhat, without removing anything she says about her experiences:

Hey Michael! Don’t worry; I have no problem in talking about my days of a working girl. No regrets, that’s what I think. Sometimes one can find a greater exploitation between a man and a woman who are in a “loving” kind of relationship than between a prostitute and her client. In the latter, everything is clear and open. It is like any other business where one has to deal with people. Some people are easy going; some others are hard to manage. 

All I know is my own experience and things I heard about at the time. Everywhere I worked I felt exploited by the premises owners and maids. The rental we had to pay was very high and the maids were very expensive. Not only we had to pay a very good wages but we also had to give them commission over our earnings. Sometimes we would go home with a lot less than we paid out…or even owing money. It was sad, depressing and humiliating. They wouldn’t pity us. The one I worked with most often was the greediest. 

All the girls would go for medical checkup frequently, and we were very aware of the danger of doing anything without proper protection. Yes, it’s easier to catch something with a one night standing than with a prostitute.

I thought it was quite safe. Out of all the years I worked there, we got mugged only once, but that can happen anywhere. We just have to be careful everywhere these days.

Well, about trafficking, slavery and all the rest of it; I don’t consider it prostitution; these are crimes, despicable crimes. Just the thought of what these poor girls, usually children, go through brings tears to my eyes. Some men are just so sick that I can hardly find words to describe them; they should be put in jail for many years…and where children are involved, they should throw away the keys.

Many kisses to you and baby Tally, and kiss Angie for me when you see her.

Martha

Beyond its honesty and openness, there are several striking things about this message. The first is in Martha’s opening paragraph, where she writes about the contrast between the ‘open’ relationship between prostitute and client in contrast to certain other relationships. Working girls and their clients only do openly and honestly something that mirrors the more covert dependent/exploitative relationships that can exist between other partners. It’s often been argued that traditionally, the state of marriage was exploitative, in that the wife would provide sex, the rearing of children, cook the meals and keep the house clean, all in return for financial security. In past times, it was virtually impossible for the vast majority of women to be financially independent.

Martha and her friends were exploited not only by men (in the sense that the rents were very high) but also by other women. This somewhat turns the table on the popular idea of prostitutes as tragic victims of men’s despicable behaviour – which of course is often true, but a simplification nonetheless.

They felt safe. That’s not to say that some clients weren’t ‘hard to manage’, but generally the women felt okay, and the clients were as mixed in personality and behaviour as any other segment of the population.

They practised scrupulous sexual hygiene. It’s not how promiscuous you are that makes you dangerous as a sexual partner; it’s how blithe and careless you are in your behaviour. Again, in some ways sex working is not much different from some other sexual relationships, and may in certain respects be a lot safer. I realise that some working girls, if desperate for cash, will have sex without using condoms – but again, this is far from universal.

The fact that there are often dangers involved in sex working, and that many sex workers are desperate, exploited, abused or under-age, doesn’t strike me as a reason for generalising or discriminating in a negative way. Many sex workers themselves insist that these are valid reasons for legalising their profession. Legalised brothels, monitored for safety and hygiene, would do much to protect sex workers from exploitation, and both the workers and their clients from infection. Sex workers are still often afraid to approach the police when they have serious reason to, for fear of arrest and prosecution. Stigmatising or legislating against prostitution tends to drive it underground, where it’s far more dangerous.

Martha’s letter shows that even near its best, prostitution is a pretty exploitative profession. And even many of Martha’s clients were probably under the mistaken impression that they were paying her for the pleasure she gave them, and not the maids and others who fed off her. But then, look at the way that bankers exploit their staff and customers, and sex working suddenly doesn’t seem that different. The banks (who caused the financial crisis) and corporations who make billions in profits and don’t even pay their taxes; MPs who effectively commit benefit fraud through their expenses (our taxes); multi-millionaire government ministers who keep getting richer while cutting vital welfare and services… The Murdochs! It’s the way things are now (capitalism is parasitic almost by definition), and it seems to me unfair to single out just this one profession.

On the other hand, at its worst this one profession involves abuse of a terrible kind. I’m not sure if trafficking and slavery are continuing to get more common or not, but certainly it’s worse than most exploitative practices you’d expect to meet in everyday life. Perhaps it’s because of these terrible practices, that while Mr Dalton correctly (if slightly sweepingly) refers to prostitution as exploitation, the examples he gives are of the worst kind: sexual slavery, trafficking and paedophilia. Yet my friend Martha says that these crimes are ‘not prostitution’ – they are simply heinous crimes. They bear little relation to the profession she used to work in – unless it’s in the same sense that a brain tumour is like a mild headache. We would not call an Eastern European au pair who is kept as a slave a nanny or a cleaner, even though she does many of the same things as a nanny or a cleaner. She is simply a slave.

Perhaps it’s just a question of semantics. Yet I feel that labelling and wording are important when making generalising statements about a particular group within society.

Personally, I think that sex working fulfils a widespread need. I’m sure that many clients are purely casual or thoughtless in their behaviour, and some can be abusive too. But many people (not necessarily men, either!) find it difficult if not impossible to have a sex life without paying for it – whether because of loneliness, lack of confidence, lack of opportunity or even disability. Having spent the first decade of my adult life without a girlfriend or even a one night stand for comfort, I can’t say I blame them. Some people have strong moral views against prostitution, but I would not like to judge either the sex workers or their clients, certainly not without knowing their personal reasons.

Is it ‘sad’, as Mr Dalton says, that the clients of sex workers choose to obtain sexual satisfaction in this way? Yes, maybe, although the reasons for being a client must be at least as varied as the reasons for being a prostitute. Perhaps, not being able to have sex at all is even sadder – you’d have to ask the person concerned. But of course, not many clients would come forward to answer the question, because the stigma is so severe.

As for the difference between sex shops and brothels, I think Mr Dalton over-emphasises it. He says in his letter that the new local sex shop is morally okay but a brothel wouldn’t be. But pornography can be highly exploitative in many of the ways that prostitution can. I wouldn’t have a problem with the presence of a legalised brothel in my town; after all, I expect sex is sold here anyway, just like anywhere else! We can’t prevent prostitution; not for nothing is it dubbed the world’s ‘oldest profession’! What we can do is make it safer and less exploitative – for as many people as we can. In a civilised society, surely people’s safety, health and well-being should be the most important concern?

Legalising brothels would also mean that clients would know they could go to legalised establishments without fear of harming anyone or having anything to do with that appalling kind of slavery. I’m sure that many of them must care just as much as anyone about the injustice and cruelty that has been on the increase in recent years, and would not want to contribute to it. Legalising brothels would not protect everyone, but it would be a huge step in the right direction. Sadly, unlike in some other countries, governments in Britain have so far placed a Victorian ‘morality’ above common sense, decency and the safety of all concerned. We can only hope that things will change for the better in the future.

I know that Mr Dalton is not prejudiced in the way I mean here, but it seems that there are already far too many groups in our society who are stigmatised and generalised about: from Muslims, travellers and asylum seekers to the disabled - and even foxes! To state the obvious, sex workers and their clients are as much a varied mix of people as the rest of us. Yes, there can be appalling abuse and exploitation involved, and because of this we need to make the profession as safe and out-in-the-open as we can. But I believe it’s also true that, even now, the oldest profession can often be less sensational and much less sordid than many people believe. 




Postscript: A follower of this blog has sent me the link to this story, about a call from a (female) New South Wales MP to decriminalise sex working and provide government funding for the disabled to hire sex workers http://www.adelaidenow.com.au/news/south-australia/disabled-deserve-sex-rights/story-e6frea83-1226310720177. This is the sort of humane response to sex working - and also the disabled - that is a breath of fresh air to me. As far as I know, the state of Victoria has already legalised brothels. In the current political climate though, I can't see either of these measures happening in Britain!

Shared Natures: getting out, and meeting Ellis the fox cub

Like so many people who suffer from chronic pain or illness, isolation is a constant difficulty. I spend a lot of time at home, only able to move around for short periods because too much activity can trigger pain flare-ups. I go for a short walk each day. I’ve never learned to drive, and to do so now would be too expensive as well as painful, due to problems with sitting. For three days a week I’m completely alone because my partner Angie lives and works in London on those days. In these circumstances it can be very difficult to stay positive and cheerful, and I know that this isn’t unusual amongst the many other people who live in similar circumstances.

As I rest, on and off, in my very comfortable reclining chair in the living room, I am sometimes prey to a kind of existential loneliness, where I feel cut off from the rest of the world. Because I have periods of anxiety, noise can be stressful, and silence can be spooky. Four years ago I had a nervous breakdown in this house, suffering severe anxiety for several months, and with a lot of hard work and support I recovered, but I still occasionally have setbacks. I work hard at various relaxation and self-help techniques, and they do help a great deal. But despite the frequent presence of our beloved cat Tally, nothing helps to combat isolation like contact with other people does. For several years now, my main contact with the outside world on those three days has been television, the internet and the occasional phone call. Facebook, that social network with a bad press, which is often accused of encouraging isolation and ‘virtual’ relationships, has made a huge positive difference to me, all the more now since I’ve joined a closed group for other sufferers. The support and friendship we people in different corners of the world give each other is an absolute joy, and my only regret is that because much of my computer time is taken up with writing, I don’t spend as much time with my friends there as I’d like.

This rather lengthy preamble is meant to contrast the life I experience most of the time with an episode of sheer joy when I was actually able to get out and do something different. The episode itself gives me an opportunity to write about a recent passion of mine which is all the more intense because of the current British government’s obsession with legalising the persecution of wild animals – and the surely-not-coincidental proliferation of anti-fox stories in Conservative tabloid newspapers. All my life I’ve related to those who are persecuted, bullied, legislated against or bombed to smithereens – so no wonder I became a peace activist! Maybe it has something to do with years of bullying in my childhood, or maybe it doesn’t. But like I said once to my therapist, in a moment of realisation, one of the reasons I’m so against fox hunting is that “I always felt like the fox”!

The British Wildlife Centre is an hour’s drive away from Eastbourne, and very close to the beautiful Ashdown Forest (where a certain Winnie-the-Pooh once lived). Last autumn I visited it with Angie, and for about half an hour or so I spent time in their fox enclosure, photographing these beautiful animals as they were fed by the keepers. I got some lovely photos, but it was also a very moving experience for me. As I sat so near the foxes, I couldn’t imagine how anyone could want to chase, terrify and kill them. Their resemblance to certain household pets (and I always think of them as curiously cat-like dogs, even though they’re far more closely related to the latter) was incredibly striking. The same look of intelligence was present in their eyes and behaviour. Would any of those ‘hunters’ traumatise and kill their beloved dogs or cats? No!

My passion for foxes really began in those moments of closeness. I tend to agree with the Buddha that most acts of evil or cruelty are done in ignorance of our shared natures. We don’t have to anthropomorphise animals to make this true. It’s a scientific fact that we’re all related; humans and all other animals have common ancestors.

Earlier this month, in the midst of the Ashdown Forest spring, Angie and I got a chance to go again. This time it was to meet Ellis, a rescued orphaned fox cub who was being reared at home by one of the keepers (where he apparently enjoys playing with her adult black Labrador). Once he’s old enough, Ellis will be released into an enclosure with Biscuit, one of the adult foxes.

As Katie the keeper held him, we got so close to Ellis that we could have cuddled him ourselves. The cat-like quality was even more evident; although a canid, Ellis still reminded me of Tally in his movement, eagerness, and nervousness battling with curiosity. The little thing couldn’t keep still! – constantly moving from one side of Katie’s body to the other, and consequently not easy to photograph. But both Angie and I felt the same strong impulse to smuggle him home. And although he was born a wild animal, Ellis seemed already at least half-domesticated.

I spent a while on my feet, not only with Ellis but also photographing polecats, adders and a sleepy adult fox who rested under a yellow-flowering gorse bush and looked a little warily at the small children crowding by the fence (“Hello, Foxy Loxy!”, said one). So I was in a little worse pain than before, and the car journey home seemed longer than the one earlier. But I can do these things sometimes, just not on an everyday basis or in a flare-up. The pain settled down again – and I got some lovely photos of Ellis!

As I sat telling my therapist about this a few days later, I realised that when I have these special times – getting out somewhere new, meeting other people, doing something I love – “I feel indistinguishable from my old self”. I meant the self that I felt I was before I became ill. And this is one of the dilemmas for all of us living with chronic pain or illness. We long to be able to do the things we used to do, live the lives we used to lead. We all feel a great sense of loss, as if we’ve lost our identities as well as the ability to do things. But we’re held back by pain, or by severe fatigue, or (in my case) anxiety and loss of confidence as well. This isn’t always obvious to non-sufferers, because our illnesses are often invisible – indeed, we are often invisible, when forced to spend most of our lives at home or even in bed. This is partly why I feel such a sense of kinship with my friends in that Facebook group. We all understand these dilemmas – our frustrated needs, our isolation, our physical and emotional suffering, and our frequent misunderstanding by other people. It can be very healing, comforting and cheering to get in touch with people I share so much with.

Even so, I am trying to get out a bit more now. I felt like hibernating in the winter – spending more and more time curled up in bed. Now I’m starting to come out again. We could have gone back to see Ellis yesterday, as he was running about in his new photographic enclosure; but that lack of confidence I mentioned returned, and I didn’t quite feel up to it. It’s a difficult balance – doing too much could precipitate a flare-up. But I want that feeling again, of experiencing the ‘old me’, of being Michael again. I’m still Michael at home, of course, the same as I ever was. But thanks to pain, anxiety and isolation, it doesn’t always feel that way.

Now a new opportunity has come up. The Fox Project (in fairly nearby Kent) has days when the public can meet the foxes in their hospital, and other days when we can meet and hold the cubs. This is too good an opportunity to miss! The next day is 6^th May, and if we can’t make that one then I’ll make sure we get there sometime soon. To hold a cub!!! What a privilege! Such noble animals, yet sometimes so easy to get close to!

I know I’m a bit fluffy. But one thing I learned four years ago when I’d recovered from my breakdown, was that it doesn’t matter how embarrassing or childlike I behave any more – and my love of furry animals dates way back to my childhood. As long as it doesn’t hurt or harm anything, if it’s fun and brings pleasure to life then it’s okay. I’m learning to be kind to those aspects of my personality, instead of feeling ashamed of them. So I’ll carry on being fluffy! But it doesn’t mean that I lack respect for these wonderful creatures. Wild animals they may be at heart, but I recognise and rejoice in our shared natures.

Sunshine Made From Rain

For some time now, I’ve been trying to think of a good title for this blog. All the really great ones seem to have been taken. As I ran through the blogs of friends of mine who similarly suffer from chronic pain and illness, a beautiful phrase kept coming into my mind. ‘Sunshine made from rain’… It’s not the name of a blog but a poem, written by a Facebook friend last year, not long before she died.

Amberlin Wu was a dancer, a writer, and activist and a therapist, living in the San Francisco Bay Area of California. She kept chickens in her back yard. She also suffered from Chronic Fatigue Syndrome – as she put it, “the bad kind”, the kind that is absolutely devastating to sufferers’ lives. I didn’t know her well, so the details of how CFS affected her life I’m not really sure, but I do know that she had good periods when she could go out to the beach with friends, and flare-ups when she could barely get out of bed or even move. She worked hard to publicise an illness (or, quite possibly, a collection of different illnesses) which is still deeply misunderstood by many of the public and even medical professions. As my friend (and Amberlin’s) Toni Bernhard has said, ‘chronic fatigue’ is an absurd misnomer. It is a state of deep and chronic sickness, nothing like the ‘fatigue’ that most of us experience from time to time.

I only ‘met’ Amberlin on Facebook only a few months before her death; we had both written contributions to a mutual friend’s book project, and I thought hers was just wonderful. We only really exchanged a few brief messages over that time. As a result, I still don’t know exactly what she died of, but assume that it was from complications of her illness (little known fact amongst non-sufferers: CFS – or ME, as it’s more commonly known in the UK – can sometimes kill). And her poem, ‘Sunshine made from rain’, has felt even more touching since she passed away; it expresses deep sadness and joy in almost equal measure. To experience the world around her so fully, even through pain and illness – and then, quite suddenly it seemed to her friends, to leave the world entirely… At the time I had no idea she was so ill, or that CFS could take away a life, just like that.

What came across most, however, from Amberlin’s life, her writing and her personality, was that she truly loved life, and that she was determined to live it as much as she possibly could – and to help others live it too. Her Facebook page is still online, kept going by her mother Ann, and messages to Amberlin are still posted by her friends, saying how much they love her, miss her, and value the friendship she gave them. She was an incredibly loved woman – that much is so clear. With respect to her cluck-clucking chickens, it was Amberlin who made sunshine out of rain.

Although I’m not nearly as devastatingly ill as Amberlin was, my own chronic pain and anxiety have affected my life in some similar ways. And having been through periods where I was tormented and couldn’t see a way out of the hole, I’ve re-assessed aspects of my life since and am trying now to create something positive out of the pain I’ve been through – both for myself and for others. Because of this, the title and content of Amberlin’s beautiful poem resonate with me all the more. So the poem has given me my own title for this blog. Warm thanks to Ann Wu for kindly giving her consent for me to use and quote from it, and to Amberlin for writing it. And of course, for living her life and being the warm and giving friend she so clearly was to others.

You can visit Amberlin’s blog at http://bealightcfsawareness.blogspot.co.uk/ Meanwhile, here is her poem.

Sunshine made from rain

Today, I’ve been teetering along tears

I don’t know what or why

To stay in bed

Or get into a car and go

Go somewhere that might take me away.

There’s a grief inside me

Though I don’t know its name

It reaches up into my throat

With its clenched fist

Making it difficult to swallow.

The cluck cluck of chickens

Comes through the open window

Floating in from the farm

It’s magic born from sadness and suffering

It’s sunshine made from rain.