Saturday, 20 February 2016

My Autism and Me: Fighting the Fear

I’m autistic.

No, I’m not Rain Man, I’m not a mathematical genius. No, I can’t draw London from memory, or recite Pi to a million places. I’m just an ordinary mum. I do crafts, walk the dog, hang out in coffee shops with my mates, rant on Facebook about the wrongs in the world and have an obsession with romance fiction.

I’m probably not all that different to you.

And I want the same things you want: the love of family and friends, a comfortable home, people who understand me and a sense of place in the world.

I’m not a psychopath. I do care - possibly more than is good for me. I am not ‘lost in my own world’, nor was I ever, except for my love of day-dreaming. I don’t particularly lack empathy, although I do sometimes struggle to ‘get’ people I don’t know well, and I am terminally incapable of taking a hint.

I’m not insane and I’m not stupid. Well, I have a degree in political science and I’m not delusional (as far as I can tell).

And I’m not exactly like other autistic people, and they’re not exactly like me. I’m unique, like everyone else, as the Internet meme goes.

So what is it like to be autistic, people ask me? Well, for a start, I’ve never been anything else, so that’s kind of difficult to answer. I might as well ask my dog what it’s like to be a dog. Even if he could talk I doubt it would be enlightening. When has he not been a dog? But it did occur to me I could share with you a little of what my life is like:

Emotionally, my life comes in waves.. Despite my autism, I like people. I like getting to know new people and finding out about them and what we have in common. But I can get socially isolated if I don’t watch myself, and bored and understimulated.

So I wake up one morning and I think “Right, I want to try this new voluntary job/making friends with the neighbours/trying this new activity”. I’m anxious, but I put it aside. This will be great. This will be so much fun and I know I can do it! I just have to push myself and be brave.

The wave is on a gentle rise.

I reach out, I offer my services, I offer my friendship and at first, everything is fine. I’ve found a new activity, a new social circle. This time it’ll be okay, I tell myself.

Meanwhile, my anxiety at being out of my comfort zone is rising. I control it. I won’t let it get the better of me. But I make social errors, and every time, my confidence drops  - I miss a hint, I say something that makes a person frown, I mess up on a task I’ve been asked to do… My anxiety rises, like a great wave that seems to suck water from the beach.

When I’m on my own, there is a war in my head between worrying about what I’ve said, what the new people think of me, and whether or not I can actually do what I’ve offered to do. I fight to stop my mind going down that road: It’ll be fine, most people are nice, most people make allowances if you’re kind and sincere. I’ll be fine.

I start to doubt myself. I’m not as sure I can do this. What if it all blows up in my face? I’ll have failed people, or got in the way, or wound people up; and that is even worse, in my eyes, than being unpopular. The slightest frown or odd look from my new friends, and I’m struggling to stop my mind from going into a tailspin. What if they hate me? No, I remind myself, people rarely hate other people. Hate takes effort. They may be mildly annoyed at best.

The thing is, I can’t be sure. I don’t mean to be paranoid, but you have to understand your facial expressions, your body language, are so much Greek to me. I have no clues to judge, to see your reactions to what I’m saying or doing. You may praise me, but are you sincere? I often miss sarcasm. You could be a lovely person, or a bully. I have no way of distinguishing. And in the past, so many times, I have been disappointed by a friend I thought I had, who turns round and rejects me - presumably driven to it by my inability to take the hint. I try not to think about that. I try to push through the hurt and the fear and be brave, be calm, remind myself I’m OK.

The wave starts to peek, racing towards the shore, picking up debris as it travels.

I start to screw up. I fail to do something I’ve promised to do - I don’t know why. I just procrastinate, try to avoid thinking about it because its too stressful. I mistake intentions and misunderstand instructions. I turn up at your house in the middle of dinner and I phone you when you’re about to get in the bath. And in the attempt to not think about scary things, I forget a few important things as well. I forget that meeting, I forget to bring the paperwork, I forget to fill in that vital form.

You get angry with me. You may not shout or show it openly. That’s worse. I sense negativity, but I don’t know why. Are you angry, disappointed, sad? Have you a headache or am I a headache? Or is this just paranoia that I’m making up inside my head? What can I do to make it right? I have no idea. Thinking about it hurts.

I want a new friend, a new activity, but engaging with the world is confusing, frightening, out of control. I want to retreat. Go back to my quiet world, even if I’m bored and lonely. I want to be doing familiar things with familiar people. People I don’t have to work so hard to be with. People whose conversations I don’t have to analyse into the small hours, trying to cover over mistakes..

Then the wave breaks. I am awake until dawn, heart pounding, mind fixated on what I’ve said, what you said, what happened, what is real, what is just fear talking… I can’t remember your face, your expression. I try to guess what you’re thinking, but I cannot trust you if I ask.

People don’t say what they mean. I know that sounds bad if I say it. It sounds like I’m making you out to be a liar, but I’m not. I know you mean well. I know everyone means well. You don’t criticise people just because they screw up a bit. You don’t want to hurt. Neither do I. That’s the tragedy: neither of us saying what we mean because of fear, because everyone wants to be liked, to be admired, to be respected. And I don’t know what I’d have you do - either way, I’ll be hurt, I know, so its not as if telepathy would help, even though I fantasise it would.

The fundamental problem is, you are an unknown quantity, and for me, an unknown person is like the deep ocean. There may be treasure, down there, beneath the waves, but to get to it I have to hold my breath and dive and dive, but not too far that I cannot come back up. I am brave until I start to run out of air.

So the wave breaks, and everything is swept away. You lose your temper with me, I’m fired from my voluntary job. They tell me I “not a good ‘fit’ with the team”, I’m “maybe better suited to something else”, you “can’t deal with the drama in your life”. “It’s not you, its me”. I am both relieved and disappointed, hurt and frustrated, and castigating myself for one more letting the fear rule me. But at least now I can rest.

For a while things are peaceful, my anxiety retreats, but I know that before long I will try again, and again, and sometimes it’s worth it. Sometimes I reach that treasure in the bottom of the sea and sometimes the waves don’t get too big. And when I despair and swear to myself not to bother, not to face that mental pain, I look at my friends and I look at the things I’ve achieved and I think “It’s worth it”.

And besides, I have a bigger fear: the fear that I will stop fighting this wave and be swept away altogether.

Saturday, 10 October 2015

Saving Money the Tory Way - a dystopian fantasy

Disclaimer: the majority of this blog is intended as satire. A kind of blog version of 'Cards Against Humanity', which is, ironically, where I suspect the Conservatives get all their best stuff. If you are offended by blatant fascism, even for the sake of humour, please read no further.

'1984' by George Orwell, poster

The Conservative Party of Great Britain claim that their great plan of enforced Austerity (TM) will 'balance the books' and thus save the nation from financial apocalypse.

This is despite the fact that during the course of the last Tory government (albeit a coalition with the Liberal Democrats) they managed to make the national debt go up rather than down (as at 2015, it is about double what it was when they took over, according to ONS figures). An intelligent person might suggest this is evidence that Austerity doesn't work, but that's not convincing to the Tories.

So, having listened to the Conservative Party Conference, and seen some of their money-saving ideas, I thought I'd propose a few more things they could do, using similar logic to that used for the current measures:Things like cutting Child Tax Credit, statements that it is not the state's responsibility to keep disabled people out of poverty, alleged plans to increase university student tuition fees, cuts to the police, conventional armed forces, nurses, doctors; privatisation of essential services, even things like child protection services, prisons, the forensic science service and of course, health and education.

My helpful suggestions follow on from that. I reckon I could not only cut billions from the budget, I could transform Britain into a secure, stable state which will last for a thousand years! We could call it the Third... Empire? Or maybe that would sound better in German?

So, here's what we could do:

1. Sell off the Motorways.

Turn all of Britain's major trunk roads into privately owned toll roads. I expect someone like the Chinese or Saudis could be interested and have the £7 billion pounds necessary.

2. Student Loans for Education

When student loans were brought in for university students, we were told there was a 'graduate premium' - graduates earned more than non-graduates, and should therefore contribute towards the cost of their education.

Well it turns out that literate students earn a lot more than illiterate ones, so why not extend the student loans idea to those starting out in education? Reception (4-5 year olds). Everyone can still get an education - they don't have to worry about paying back the loans until they are earning, so it won't discourage the poor from educating their children - but it means the education system will be properly funded by those who benefit from it.

3. Repeal the Education Act.

Boy in a dunce cap
Compulsory education means that teachers often have to spend a lot of time with children who are, let's be honest, not entirely up to the task. And children who don't want to be there and truant a lot.
Without compulsory education, those 'no hopers' will just stop coming to school and save us all a lot of effort.

Certain children could be labelled 'Educationally subnormal' as they will not benefit from our standardised education system, and would be better kept at home. Or put to work. Maybe as toll booth operators for the Chinese motorway companies?

4. Scrap the Health & Safety Act.

The HSE cost money, for the state as well as for businesses. An added advantage being that, inevitably, without safety features in many work places, the odd worker will be killed, meaning new workers will need to be recruited. So this is a win-win policy: saving money and creating jobs.

5. Scrap the Department of the Environment.

Why worry about the environment when the poor won't live past their 30s anyway? And the rich, well they can afford expensive air conditioning systems, clean water etc.

6. Scrap the UK Borders Agency and build a bloody big fence

Solve the immigration problem, and save money by scrapping the 'not fit for purpose' UK Borders Agency, and replacing them with part-timers recruited from UKIP, BNP, Britain First and other such organisations. You may even find willing volunteers from the ranks of the Conservative Party!

Of course, these people won't be very well trained, so they will be bolstered by a giant fence all round Britain, and armed drones that can shoot any Johnny Foreigner trying to get in. The odd innocent may be killed, but "the needs of the many outweigh the needs of the few" (better not quote that at them - they probably don't watch Star Trek).

It would be advisable to ensure Nigel Farage's wife is inside the fence before releasing the Kippers and drones.

The fence and drones will cost money, of course, but sometimes you have to invest for success. Maybe you could get the fence built by the unemployed and the drones by some impoverished university engineering students?

7. Make unemployment illegal. 

Inside the workhouse

If you are unemployed, you must report to your nearest Workfare department where you receive your work detail, and a day's rations. No other unemployment benefits will be paid. Begging will be strictly illegal.

If you are homeless, you will need to report to the Work Place, where you will also be given a bed for the night, in addition to the food. Unless you are deemed a 'vagrant' and are turned out, you will be allowed to stay in the Work Place as long as you work. The work will include working for the private motorways companies and fixing the bloody big fence around Britain.

Unemployed individuals with particular talents may be allowed to volunteer as border enforcers or operate the drones.

8. Arm the police and scrap P.A.C.E.

The Police and Criminal Evidence Act leads to so much paperwork when the police should be out there catching criminals. So it should be scrapped.

There won't be as many police in the Third Empire, of course, as 50% of them will have been fired. So those that remain will have to rely on technology (with universal access to all CCTV, emails, social networks and mobile phone networks) and shooting people who look a bit dodgy.

Since most people who end up in court are guilty anyway, very little harm will be done by allowing the police to decide guilt or innocence. So unless a person can stump up the necessary court fees to have a trial, the police can assume guilt.

And as they do such a good job, if the odd miscreant never leaves custody, or is shot by police in the operation of their duty, this is an acceptable sacrifice.

9. Get rid of Embassies and diplomats

Embassies are mostly expensive and who knows what they do anyway? I don't. Keep the embassies in USA, Saudi Arabia and Dubai, and anywhere else Tory MPs like to holiday and might get into trouble. Otherwise, scrap the lot of them. We don't want to be encouraging foreigners to come here, for goodness sake.

Oh, except the Russians and the Chinese - maybe embassies there too, but with strict instructions just to help sell off bits of Britain, not do anything actually, er, 'diplomatic', like interfere with foreign human rights abuses. They can't even make a decent cup of tea, so why should be concern ourselves with them?

10. Stop state help for the disabled
1950s collection box for disabled children

You know that its actually cruel to encourage people to think they can lead a decent life when they're effectively useless? If families want to keep their disabled relatives alive, let them. But it's nothing to do with the state. Disabled people are in two categories: the sort that could work but choose not to (they can go to the Work Place), and those who are useless.

I am not advocating killing them. What do you think I am? Some kind of monster? Oh no, I believe in compassion for those less well off than myself. If families or charities wish to help them, I'll rock up to the odd charity ball for them, auction off a pair of socks previously worn by the Duke of Kent for £1000... but the state owes them nothing. It is up to families to help their own. And you know, state help just encourages families to ignore their responsibilities.

11. Privatise the NHS and social services.

Oops, they've already done that. Silly me.

Saturday, 5 May 2012

Not absent, just charity-ing

Just to let you know, my blog has not died, it's just resting its eyes for the moment. I have been busy helping my partner and friends at the Eatons Socon Community Association (ESCA) run the Eaton Socon May Day Celebration, which is on May Day Bank Holiday, 7th May.

The Eaton Socon May Day Celebration fair is a tradition going back hundreds of years, with many charity stalls, maypole dancing, local bands and dance troops, and the crowing of a May Queen. Eaton Socon is one of the last villages in England to keep this tradition going continuously. 

Every year, ESCA and the May Day Celebration raise thousands of pounds for local and national charities. Even in the middle of a recession, the generosity and support of individuals and local companies, is incredible.

As well as more general 'gophering' (go for this and go for that) for ESCA, I've been working on my own stall, for Arthritis Care. We're having a "Name the Bear for Arthritis Care", and Castle Pong (which is a non-alcholic version of the popular bar game of Beer Pong, only with a castle, build by my daughter). We've a lot of soft-toy prizes to give away.

Now that my medical condition is at least more stable, I'm hoping to do a lot more for Arthritis Care in the future. I'm doing a coffee morning and bake sale next month, and I've a gift shopping party planned in the autumn. I've a Just Giving page in case anyone would like to support me 

After the May Fair, I hope to be back blogging again, so catch you all again soon.

Tuesday, 17 April 2012

From 'True Believer' to Sceptic (Skeptic)

When I started this blog, my intention was to avoid the tediousness of just talking about myself and my life. And since I lived it, I know what happened already and so do most of the people who know me. However, lots of other people have asked me about how I came to be a sceptic and secularist, from having once been a fundamentalist, Evangelical Christian, and so I decided to share something of my story. It is long, unfortunately, with many twists and turns (no reverse 'Road to Damascus' experience) but I have tried to relate the important highlights, based on my original postings on the Bad Science Forum.

Many people have said things to me like “But not all Christians are like that”, which of course is true, but the fact remains that this is what happened to me and the people who treated me so badly did call themselves Christians. In fact, they regarded themselves as the only true Christians. The rest were just kidding themselves (they would say). Sadly, I know that my experiences were not unique and there are many other “ex-Evangelical survivors” out there who have similar, or worse, stories to tell. This is the story of my conversion from 'True Believer' to sceptic:

Becoming a 'True Believer'

When I was at school I wanted to be a doctor, but I couldn't get the grades, so instead I did biochemistry at university. This was not a good choice for a dyslexic with Aspergers Syndrome, but it would be many years before I would be diagnosed. My disabilities made spelling, organisation and socialising very difficult and stressful. Not surprisingly, I found university life hard and lonely. I struggled to make friends, to fit in. I struggled academically and I was immature, and not really ready to leave home.

I had been raised in a liberal, nominally Christian home, and was actually a member of the Quakers (Society of Friends), but the Quaker Meeting in my university town was full of much older people with whom I didn't have much in common. But the university had a massive, powerful, ultra-conservative Christian Union and it wasn't long before I was accepting their invitations to social events - after all, they were the only people who ever invited me!

The CU people appeared friendly, outgoing and were not afraid to express their opinions about practically anything. They were stimulating to be with and all the 'popular' people seemed to be top of the CU pile. I had no non-religious friends - my best friend was an Iranian Muslim and everyone else I got to know seemed to be part of the CU. So I started hanging around with them. In due course, I started going to church with them.

'Church' wasn't what I'd known growing up. It was nothing like the staid, traditional Anglican churches my mother went to, or the dignified silence of a Quaker meeting. It was a blast! We sang poppy songs and danced around. We were encouraged to let our hair down and with all the stress I was under, it seemed a brilliant release. Of course, there was the downside too: the rules. So many rules. About what you wore (no bikinis for girls, no revealing clothes), about sex (no sex outside marriage, of course, and strictly heterosexual), and about every minute of the day. We had a frantic social whirl with meetings, prayer groups (which were great places to share your problems), sing-songs, 'Housegroup' (bit like a club where you met up at people's houses and talked about things) and even camping trips and Pooh-sticks competitions. For the first time in my life, I felt like I belonged.

However, there was a price: a life of guilt and fear. We were constantly exhorted to be better people: more moral, more self controlled, more saintly. At the same time as being told that if we didn't, we'd go straight to hell. The teachings were lurid, often supported by emotive music and everyone around me seemed to be swallowing it. After a while, you started to act as if you believed it, even if perhaps you didn't. And after that it was a short step to actually believing it.

Following the 'Rules'

The rules were black and white, with no excuses and impossible to live up to. As an immature young person, sex wasn't something I'd really figured out, so it was a relief to be told that Christian girls like me waited until marriage. At least, that was the front. The reality was that many of the CU boys' sexual morality was based on the theory that girls were wanton whores and boys were slaves to their hormones - so we girls bore the brunt of the guilt for their misdemeanours (if a girl got pregnant, the church excommunicated her; nothing happened to the boy). I didn't even fancy boys and I still ended up feeling guilty. The issue of alcohol was similar: not supposed to do it, but everybody did. So then you'd feel dead guilty, as well as hungover, when you over-indulged.

Of course, all this trying to fit in and impossible moral standards made successful studying well-nigh impossible, especially as I was being caused to doubt what I was being taught. I started to doubt my own logic and the evidence before my own eyes. I suppose the psychological pressure was on, to keep me compliant within the group. For instance, I was told that many scientists doubted the Theory of Evolution, and I encountered apparently learned people who were creationists, including my uni tutor. These men seemed to know so much more than childish little me. I was made to feel naive for having assumed things like Evolution, were true.

I couldn't cope with my uni course and my health was horrible, so I had to drop out. By this time, I'd left the bouncy 'charismatic' church and was going to a Reformed Baptist church (Calvinist - heavily into predestination and the idea that God only saves "his few" ie us). This was less frenetic, and outwardly less extremist, but in some ways their theology was even harsher and in an attempt to understand this perspective, I had begun studying the Bible in earnest. Not that my pastor approved - the only people who are supposed to study it to that level are those who have a calling to go into the ministry, and as a woman, I wasn't eligible to do that. Women were forbidden to teach a man or be in charge of a man - God said so.

A lot of the teaching of the church had the effect of making us feel bad about ourselves. We were encouraged to be self-critical and to doubt everything we thought. Our thoughts were corrupted with sin and so how could we trust them? Having very little self esteem by this point, I didn't take much convincing that my thoughts weren't reliable, but I still hoped that if only I could intellectually understand the teachings, I could feel more secure. After all, like many people with Aspergers Syndrome, I like predictability, order and systems. I particularly loved reading apologetics - books in which Christians presented arguments against their detractors, like books by American lawyer, Josh McDowell, who argued that every apparent contradiction in the Bible could be explained away (Where did Cain get his wife? God didn't say Adam and Eve were the only humans he created, silly!). In due course, I was so immersed in the world of Calvinist systematic theology and apologetics, I had an answer for everything: It made me feel I was on solid ground.

The 'Rot' sets in

However, things weren't going so well on the personal front. Having left uni, and now working for the NHS, I had a rather unpleasant, older boyfriend, who was sort of 'set up' for me by the church. But despite supreme effort, I often got the feeling that people in my church didn't really like me. I asked too many awkward questions, I liked to debate with the men (women were supposed to be silent and humble) and worse, I knew more than they did about theology!

I got very lonely. I had friends but no one understood me. My non-Christian friends were mystified by my beliefs; and my Christian friends disapproved of my non-Christian friends. My family were a long way away, and as non-believers (C of E didn't count) I believed the devil could use them to undermine my faith. And all the while, the constant refrain was that I was an evil sinner and that even the good I did was "like unto filthy rags". And did I mention that I fancied girls? I started to get seriously depressed.

Nevertheless, I still didn't lose my faith. I had too much invested in it, but perhaps the rot started to set in when my unpleasant boyfriend was replaced by a nice, but mentally unwell boyfriend. The poor lad had schizophrenia, but his family and church covered it up, because mental illness isn't supposed to happen to pastor's kids. We went out for a while, but had to split up when he was hospitalised. I was horrified at the callousness displayed to him by his family and so-called friends - it was as if as if he had shamed them. His family moved to the other side of the country.

I moved to a new town, where I didn't know anybody, and did what I felt I had to do to survive: got involved in the church as quickly as possible. I felt I needed friends, a social life and some security, but the only place I knew to get that from was church. However, this church was full of intellectual types who knew their Bibles better than I did - lawyers, scientists, mathematicians... how could I question my faith when 'better' people than I believed it? So I swallowed my doubts and carried on.

But by then I was increasingly tortured by my sexuality. Perhaps my lack of romantic interest in the guys had been noted, or it was simply because the church didn't have a role for floating, single women, but I felt increasing pressure to get married. I was also lonely, so when I fell for a man who was an equally tortured soul, marriage seemed the obvious solution. My dream was to run a church housegroup and be one of the respectable married women in the church (my ambitions were very small then).

It all started to unravel when we had kids a few years later. I had ended up in another new town with my husband and his new job; pregnant, out of work, in a house we couldn't afford and not knowing a soul.

Losing our faith

We tried to join a local Evangelical church, but the problem was their condition of membership was to sign a declaration of belief in Creationism. Although I had started out as a Creationists, years of living in a university town had thoroughly undermined that belief: Even the most conservative Evangelicals from my old church still believed in Evolution. Neither of us felt we could sign such a thing, in all conscience.

A couple of weeks later, a lesbian woman came to one of the church services (she was wearing a leather jacket covered in gay pride badges and had 'the hair', all spikey with bleached tips). After the service, everyone avoided her like she had fleas, so I went and got her a cup of tea and chatted to her, so she didn't feel so awkward. I thought I was doing my Christian duty, but the very next week, I was up before the church elders and accused of having an affair with her! I was shocked to the core – I didn't even know her name and I would never have betrayed my husband. We felt compelled to leave.

The final nail in the coffin (although it still took a long time for the corpse to die) was a while later, when my previous pastor who we'd respected and looked up to so much, was outed by the Times newspaper. It felt like our world was crashing down round our ears; not because he was gay, but because of the way everyone seemed to turn on him, calling the man they'd once admired a “charlatan” and a liar, and destroying his books and sermon tapes as if they were poisoned. Yet his only crime, as far as we could see, was admitting he was gay.

After that, we tried and tried to re-engage with the church, but our faith had been shattered. Not in God or the Bible at this point, but in Christians.

Of course, this meant I'd lost my social circle as well. Having two small children by now, and suffering post natal depression, things were not looking good for me. So I ended up drifting towards various mother and toddler groups and by and by, I ended up hanging around with a load of hippy mums who were fanatical about breastfeeding and natural childbirth. I replaced one obsession (Calvinist theology) with another: Attachment Parenting. And with that came lots of alternative medicine, anti-vaccination etc. which I never totally bought into, but as with the Christian thing, you hang around with people you start to absorb their ideas.

Unfortunately, it seemed I had merely replaced one lot of fanaticism for another, and many of the Attachment Parenting mums were no kinder to me than the Evangelicals. Some of their theories made less sense than Calvinism, and all the talk of extended breastfeeding and water-births in the world couldn't fix the void.

Rejected by the church

So it was that, despite everything that happened, when we had another baby and had to again move across the country, we tried to fit back into Evangelical Christian life. It was the only way we knew. However, my marriage was in trouble and my son turned out to be autistic, so it got harder and harder to be a conventional 'Christian' family. My son couldn't tolerate church services, so I was relegated to the creche. Only then, he started attacking other babies, so I had to stop going altogether.

Our attendance at church dropped, although we still wanted to be involved, but when we applied to transfer our membership to the new church, we were rejected. Given that being part of something was my main motivation for going to church, this was a huge blow. And we realised we had enemies in the church when someone reported us to social services, blaming our son's behaviour problems on abuse.

We tried other churches after that, but no one accepted our son, or me. In one church, a lady demanded to know why we hadn't put our son in an institution. I was diagnosed with Aspergers by then, and when we told the church, they regarded me as the local nutter. Fewer and fewer people from the church seemed to want to talk to us, or socialise with us. We were increasingly marginalised, lonely and desperate. I had lots of nightmares about going to hell and my faith provided me with zero comfort. We felt we had failed.

The absolutely final straw came when both my husband and I came out to the church and it was made clear to us we were not welcome. We never went back.


After that, it was a little like de-toxing from alcohol and moving to a strange country, all at the same time. It took about a year before I stopped worrying I was going to hell, but less time than that to say I was an agnostic. It felt weird not having to run around on a Sunday, trying to get the kids ready for church; and shopping in the DIY store instead was a surreal experience. Worst of all was this feeling that I'd lost my moral compass and that I no longer knew what was right and wrong. It had been so long since I had allowed myself to trust my own judgement, rather than doing what someone else told me to do.

But there was also the excitement of being finally free to think for myself and come to my own conclusions about things. I must have listened to every piece of music I'd ever heard banned from a pulpit, read every book I wasn't supposed to read (even erotica, books on other religions and Dawkins). I've done yoga, watched a gay, French film, learned to do Buddhist chanting, listened to Iron Maiden and learned to laugh at Creationists. I didn't enjoy all of it (I'm not into yoga or gay porn) but it has been an education.

I had started my Open University degree before losing my faith, but that helped tremendously and gave me the space to think openly about issues I had buried (I studied social science and politics). And four years ago, my partner and I had a Civil Partnership.

As for regrets, I regret devoting 19 years of my life to a croc, I regret all that money in tithes and donations and I regret being so screwed up about pointless things like sex, which when you think about it rationally, is a pretty silly thing to torture yourself over. And I wonder what on earth I'm going to do with all that stupid, pointless knowledge about Calvinist theology that I devoted so many years to. But I fancy that perhaps studying prepared me for my eventual Open University degree, and perhaps regrets aren't particularly useful. It's what you do now that matters.

Saturday, 7 April 2012

Gay Marriage and the 'Yuck Factor'

I have friends who sincerely dislike the concept of gay marriage. They can't exactly say what it is about gay marriage they don't like (they're not particularly religious), its just some sort of gut instinct: a prejudice, perhaps. And yet weirdly they accept my gay 'marriage' (Civil Partnership) and accept that I'd like it to be legally considered marriage, rather than its inferior cousin. It is as if the broader concept is far more disturbing than the one-off reality they encounter. Rather like the racist who makes an exception for his one black or Asian friend.

I could be extremely judgemental about this prejudice. It would almost be understandable if they were devout Christians whose churches were railing against gay marriage “destroying the whole concept of marriage” (not that I have much time for that view myself, obviously), but these people aren't even particularly religious. They seem to be basing their entire view on the matter simply on emotions, and that emotion often seems to boil down disgust at what they imagine gay men do in the bedroom.

What is mysterious is the way distaste at someone else's sexual proclivities is extrapolated to the politics of marriage. These people are not homophobes, in the sense the word is commonly used. They would never be deliberately unkind or hurtful to an actual, bonafide gay person standing in front of them; neither are they particularly attached to the idea of marriage as some holy, sacramental institution that can never change. But when you ask them why they object to gay marriage, they shift from foot to foot, use words like “normal” and “traditional”, before finally admitting they “just don't like the idea”.

Outside the Box

Basically, a lot of people don't like gay marriage because it's a new, strange idea, outside their usual frame of reference, challenging their fixed concepts about what marriage is. And it is associated with being gay, which is also a strange idea for them, outside their usual frame of reference, and challenging their fixed concepts about sexuality. After all, if you've been heterosexual all your life, and have grown up in a heterosexual society in which most people you meet are heterosexual, it is hard to imagine, let alone empathise, what it must be like to be different.

Basing your morality exclusively on what you would like to do or not do anyway, is not really a sensible policy, although it is one that most of us follow. My friend objects to gay marriage because she would never want to marry a person of the same sex. It's like my mum giving up hang-gliding for Lent, or my dad giving up ballet: no sacrifice at all!

As human beings, we often prefer the familiar and when we encounter something outside that, our reaction is often aversion. It is a self-protective behaviour, perhaps something we evolved to keep our curiosity in check so we didn't poison ourselves with some unfamiliar plant, or wander into a sabretooth's den. It serves us well in many practical situations, but in real life we often need to keep our emotions in check and think with our head. For example, our self-protection instincts aren't much help when we visit the dentist, or fill in a tax return, go for a job interview or go on a first date. In such cases, we usually overcome our instinctive fear because we know, intellectually, that these 'risks' are hugely outweighed by the benefits (painless teeth, employment, new girlfriend/boyfriend). So whilst aversion to the unfamiliar can be self-protective, when taken to extreme it can also be significantly disabling, as many autistic people report.

The 'Yuck Factor'

So what part should negative emotions form as the basis of political policy or law? Shouldn't our intellects, rather than our gut be our guide? Shouldn't opposition to a policy be based on solid, rational arguments and evidence, rather than a petulant “I don't like it”?

The problem is, it is impossible to take emotions out of politics. Politics is about people : in fact the root of the English word 'politics' is the Greek 'polis' meaning 'the people'. And people are emotional beings. We are not robots! Political activists have to care about the subject they are campaigning about: both those pro and anti gay marriage laws are often extremely passionate on the subject, and there is nothing wrong with that. Politics is not a cold, emotionless process, it is about passion, deeply held convictions and ideology.

The problem comes when there is a lack of balance between intellect and reason, passion and ideology. Do the majority of people dislike something because it is harmful to society and damaging to individuals, for sensible, rational reasons? Or is it simply a 'Yuck Factor' based on upbringing, social conditioning and assuming everyone should be like you? A Tyranny of the Majority in which a minority's rights are ignored simply because they are the minority? After all, it was once illegal to eat meat on Friday, but goose was allowed on the grounds that it hatched from barnacles. To quote the playwright, Ibsen: 
The majority is never right...[because] it's the fools that form the overwhelming majority.

Pros and Cons

When I look at the reasons against gay marriage, excluding religious arguments and those arguments simply based on the 'Yuck factor' (God doesn't like it and I don't like it), I find there isn't much there on the 'cons' column to outweigh the 'pros'. There aren't any tangible benefits to not having gay marriage, except the fact that it would upset a minority of religious people and people from traditionally homophobic backgrounds (who don't want gay people being allowed to breathe air, let alone any, more advanced rights). But these are often the same people who think the rest of us are doomed simply because we don't follow their religion and claim that 'unbelief' is the worst sin (they say 'unbelief' but their actions suggest they mean sex, other than in the prescribed manner).

I am aware that in this blog, I have not enumerated the many, sensible, and rational arguments in favour of gay marriage. Neither have I gone into much details about the arguments against. You can find a lot of material, from both perspectives and maybe that is something I may discuss in future. However, what I wanted to discuss here, using the example of gay marriage, is how we arrive at conclusions and how we decide which ideas should become law.

I believe that in the 21st century, policy and law should be based on rational argument, as well as conviction. We take emotions into account, we can even consider the views of religious people but they do not have a veto. One of the greatest dangers to any democracy is the Tyranny of the Majority: the rights of minorities must be protected. But in this example, it isn't even the a Majority that is being tyrannical: although most people aren't gay, most people are either positive or neutral towards the idea of gay marriage. It is a Tyranny of a very vociferous, powerful, yet numerically small minority that is potentially denying this right to gay couples.



On May 7th 2015, I married my wife Julia, having converted our Civil Partnership into a legal marriage, equivalent to any marriage in the UK. It was a paperwork exercise, not a ceremony, but as we hadn't had a honeymoon before, we had one in Paris. 

Wednesday, 28 March 2012

Benefit Scroungers, Malingerers & Swinging-the-lead

[Important Disclaimer: All information regards Disability Living Allowance and other benefits, given in this blog, is the opinion of the author and based on personal experience only. It should not be construed as benefits advice and the author is not a lawyer or benefits advisor of any kind. If you require benefits advice, I suggest you contact the Citizens Advice Bureau or your local Disability Advice service.]

I have always felt, as a responsible citizen of this country, that falsely claiming any benefit or allowance you are not entitled to is stealing. Not just from the “hard-working tax payer” but from society in general.

Because of benefit fraud, it is said, honest claimants have to jump through hoops to prove their eligibility, and millions of pounds go to anti-fraud units that could be better spent on helping people. And then there is the layer upon layer of tribunals, courts and appeals processes, to allow those falsely accused of fraud to clear their names. So the chaos fraudsters create goes beyond the monetary value of their thefts and affects us all.

If you believe the media, there are many false claimants out there: scroungers, malingerers, healthy people swinging the lead (pretending to be sick), people with bad backs playing for rugby teams, people with five jobs pretending to be unemployed, people with Swiss bank accounts claiming income support…. Everybody has their lurid tales of a fraudster in their street. But what is the truth? Just concentrating on disability benefits, the Department of Work and Pensions (DWP) estimated fraud on its in-work, Disability Living Allowance to be 0.5% *. In other words, 5 claims per thousand: 1 in 200 claims of which 199 are genuine.

Now, 1 in 200 claims hardly seems like the fraud Armageddon implied in the media. It doesn’t seem to correlate with the amount of time and money the government puts into catching the fraudsters. And it seems odd that everyone you talk to knows somebody who is definitely “not really disabled” and can regale you with the anecdotes that ‘prove’ this fact. So what is really going on and who are these fraudsters?

Who is disabled?

Firstly, there is a misunderstanding about what constitutes ‘disability’. A few years ago, we had a neighbour who was claiming Incapacity Benefit, or one of its precursors, who used to tell people he had a back problem, and that was why he couldn’t work. So imagine our surprise one day when we saw him laying a concrete patio! Our immediate reaction was to consider reporting him, but his wife saw us staring at the building work and came over to speak to us.

She pleaded with us not to report him because, she whispered “It isn’t actually his back that’s put him in disability”. Actually, it was his brain. A few years before, he’d had a traumatic brain injury and surgery that had left him neurologically damaged. But his memory of what happened wasn’t brilliant and so he genuinely believed his back was the problem. Plus its embarrassing to admit to having brain damage.

We later encountered someone who had tried to give our disabled neighbour a job. It hadn’t worked out because he really couldn’t focus on what he was doing and would wander off, leaving the job half-done. He couldn’t follow instructions, couldn’t be at all flexible, struggled to learn new skills and had poor social skills. The result was he was virtually unemployable.

A lot of people in receipt of disability benefits have ‘invisible’ disabilities: neurological problems like my neighbour (strokes, MS, epilepsy), mental health problems, dementia (which doesn’t just affect the elderly), learning disabilities and chronic pain conditions. I have a chronic pain condition myself and have experienced a situation where a person in authority said “Well you don’t look like you’re in pain to me”. If anyone can tell me what I was supposed to look like to be accepted as in pain, I’d value the information! But the problem is, especially if you’ve been enduring pain for a while, you really don’t show it outwardly. In fact, one of the ways you learn to deal with it is to put it to the back of your mind and avoid focussing on it.

Just because a person appears to be fine doesn’t mean they are. I have many disabled friends who don’t ‘look’ disabled: some with severe mental health conditions, like schizophrenia or chronic depression, people with arthritis or fibromyalgia, gut disorders e.g. Crohns, and neurological disorders. Just because you see someone walking with a stick doesn’t mean that that is their primary disability, for which they are receiving benefits, but if you were a person with an embarrassing condition, would you want to tell everyone just in case they reported you for disability benefit fraud?

DLA isn’t just for the bed-bound

Secondly, you get DLA because you struggle with certain aspects of life, not all of your life.  It is based on how much help you need for daily activities of living, such as bathing, eating, taking medication etc. Once you are up and about, washed and dressed, and have had your breakfast, you may be able to carry on with the rest of your day with minimal help. But of course, the public don’t see you getting help for getting up, washed, dressed and having breakfast, even if you needed a lot of help with that. Even a significantly disabled person, who meets all the criteria for disability benefits, might be able to go to a dance, work in a charity shop or walk the dog.

The whole point of allowances like DLA is that they enable a person to live a full life, despite their disability. DLA isn’t just about the miserable things in life, like beige coloured bath stools or mobile phones the size of bricks, it is also about supporting a person to socialise, get out and about and do stuff they enjoy. Sometimes it seems Joe Public is only happy when disabled people aren’t enjoying themselves.

DLA is an allowance, not a benefit

Thirdly, many people mistakenly believe that all disability benefits are out-of-work benefits, so if a disabled person is working, or doing activities that could be work-related (like laying a patio) then they are automatically fraudsters. In fact, DLA is not a benefit, it is an allowance, and often disabled people use their DLA money to pay for things such as transport to and from work, and equipment that helps them in work. DLA was originally intended to compensate a disabled person for the extra costs of living with a disability, to put them on a par with able-bodied people. For instance, my mother’s MP3 player cost over £200 because she is registered blind and needs a special, talking one with plenty of memory for her audiobooks. But a sighted person could buy a perfectly good MP3 player, with a similar capacity, for under £15. The same applies to watches, mobile phones, computer software, even a talking microwave, which costs hundreds compared to the regular microwave you can pick up for £40. Very little of the essential equipment my mother uses day-to-day is provided by the state. Even my mum’s talking book machine has to be rented from the council.

The DLA claim form seems to be written with the assumption that many claimants will be in work. If claimants are out of work, there are additional benefits, such as Employment Support Allowance (the replacement for Incapacity Benefit) people can claim as well as DLA. DLA claimants tell me that they have been reported, sometimes several times, by people who find out they are in work. This is annoying and wastes everybody’s time.

What about the real fraudsters?

Of course, no one is saying there aren’t fraudsters. People do get DLA who shouldn’t, the DWP admits that. So who are these people?

Probably the majority of DLA fraudsters are not able-bodied people who lie, they are disabled people who exaggerate. Whilst I would not condone it, I also do not believe this is as serious a problem as people who aren’t disabled at all and lie. Sometimes, these people are not deliberately exaggerating, but struggling to come to terms with their disability and consequently over-egging the pudding somewhat. My registered blind, guide-dog using mother frequently relates how people will come up to her in the street and complain bitterly and upset that they can now ‘only’ read large-print books.  My mother can only dream of having such abilities but to them it is a big deal and its scary. And when information-giving for Arthritis Care, I often encounter individuals devastated because they have to take tablets “for the rest of my life” (a problem I don’t understand, particularly if the tablets work and keep them healthy and/or pain free). On the other hand, I also meet individuals who are struggling to cope who don’t even recognise themselves as disabled. So perception is everything and no matter what tests are used, there is no test to measure how a person copes.

Another category of ‘fraudster’ puts me in mind of the saying by George Burns “A hypochondriac is right about being ill, but wrong about the illness”. Some people genuinely believe they are physically ill, but may not be. Others go to extraordinary lengths to convince other people they are physically disabled, to the point of severely limiting their lifestyles, even though physically they are fine (or start off fine, until lack of mobility starts to damage their bodies and it becomes a self-fulfilling prophecy). But to go to such extremes in order to be classified as disabled suggests to me that the person has a mental health problem such as Munchausen’s Syndrome (where people are obsessed with getting medical treatment) or maybe a personality disorder. This certainly isn’t the behaviour of someone who is sane – disability benefits are not generous and not a viable option for anyone who does not need them (bearing in mind that such people spend as much money as a ‘genuinely disabled’ person on things like equipment, transport and care).

But by far the largest frauds are not perpetrated by disabled people, or even would-be disabled people, they are perpetrated by organised crime rings, and that is an entirely different issue to that of the DLA claimant laying his own patio.

How not to stop DLA fraud

I encountered an example of the government’s plans to tackle fraud the other day, when I received notification of the new rules re. Disabled Parking badges (aka ‘Blue Badge’). I was given my blue badge a couple of years ago when my GP could see I was struggling to cope with parking within a suitable distance of the surgery, and in the hospital car-park. I was using walking aids (a scooter or a walker) and it was all a bit of a nightmare as parking spaces are too narrow. Mine was discretionary, as I was yet to be properly diagnosed at that point, and I was awarded it for three years. It has been a godsend, even in this small, market town. However, when I next apply for one, the government’s new rules apply. It’s a 26 page form, plus a medical. The nice lady at the council disabled parking office explained that this was “To reduce fraud”.

Now the thing is, criminals wouldn’t bother with all that, they’d just get a forged Blue Badge. After all, they forge passports (I watch all those TV programs about Customs & Excise). Or they’d use their friend/relatives Blue Badge, or steal one; Or simply park illegally in the disabled bays. All this form filling and medical assessments is going to do is put of genuinely disabled people from applying. Just as, I believe, the 39 page DLA claim form currently dissuades a lot of disable people from applying.

I understand the government plans to scrap DLA and replace it with the new Personal Independence Payments (PIP), which, it claims, will be even harder to claim, with even stricter criteria. Although there are still consultations on-going, I understand that you won’t be able to receive the benefit without a medical from the PIP doctors. It will no longer be sufficient just to have pages and pages of evidence and reports from your care team, consultants, social workers, occupational therapists… And the medicals will be repeated regularly. I wonder how much of a waste of time that could be when you consider that most disabling conditions are permanent (after all, a condition has to have lasted 6 months before you claim and expected to last a further 3 years for you to be eligible). For example, amputated legs don’t usually grow back and most causes of blindness are not reversible. And most of those conditions that don’t stay the same, actually get worse. So if you’re on the top rate already, and you have a degenerative or progressive condition, what is the point of re-assessing you?

The reason that the government’s prescriptions to reduce disability fraud (aka “target benefits to the genuinely needy”) are so inappropriate are firstly that they are tackling a non-existent problem: study after study has confirmed that there is no widespread fraud of the DLA system. Secondly, they misjudge the form that genuine fraud takes place: it’s not Joe Smith pretending to have a bad back, its a few individuals with a tenuous grasp of reality, and larger group individuals who are tenacious criminals. Thirdly, do they really believe the bigger the form, the greater the deterrent to fraud? (I have nothing to say about that except its stupid). Does any criminal ever say “I was going to commit fraud, but the form was so big I thought ‘Nuh’”?

Lastly, all this concern about the tiny percentage of fraud totally ignores the much bigger problem of genuinely disabled people not getting the allowances they need. Because without support, disabled people can’t work, they can’t access transport and equipment that can make life worth living, they become depressed and housebound, lose their independence and the cumulative effect costs the state far more. What started as a concern about public expenditure, and concerns about money lost to disability benefit fraud, has become hysteria. Every disabled person is suspect; disability fraudsters are allegedly in every street, everyone knows someone (or someone’s friend of a friend) who is lying about their disability to get benefits. The governments ideas to stop fraud are not only ineffective (a big form and the threat of a medical), they are a sledgehammer to crack a nut (fraud is a relatively tiny problem even by the governments own figures) and they are potentially feeding the prejudices that lead to hate crimes against disabled people.

Monday, 26 March 2012

It's not liberal and its not democratic, sorry!

I've been a member of the Liberal Democrat Party for many years. Never much of an activist (I had too much to do raising my children and studying for a part-time degree), I nevertheless supported the party through elections, doing what I could.

I never really believed the Liberal Democrats could get into government, but I had hopes. I thought perhaps they could go into coalition with Labour one day, and there act as a moderating force to some of Labour's more authoritarian tendencies. I never dreamed they would ever go in with the Tories. I suppose I fondly imagined that the Lib Dems were fundamentally a Centre-Left party: strong on welfare, education, the NHS, caring for the weaker members of society... at the same time, strong on individual liberties and the right of people to live as they saw fit (or even make mistakes, provided they were their own mistakes to make).

But it seems I was the one who was mistaken. The day they went into coalition with the Conservative Party, I realised that what I thought of as 'Liberal' was not their definition. And my priorities were not theirs. Their support of the pernicious NHS Bill was the final nail in the coffin: I lost any faith I had had in the Liberal Democrats to stop the destruction of everything I politically held dear.

I have watched 'my' party hold the coats of the Tory bullies, as they beat up the sick, the disabled, the unemployed, the elderly of this country. Standing silently by as the right-wing media demonised the poor, portrayed everyone on benefits as a scrounger and blamed the unemployed for not having a job, despite the obvious fact that there simply aren't enough jobs to go around.

What ever happened to the idea of the Welfare Citizen? The view that every citizen of this country, from infant to elderly, was a full member of society, with the right to support when they fell into hard times; an education, healthcare, a right to a fair trial, a decent life in old age... in return for their loyalty and whatever positive contribution they could make towards society, whether it be paid work, volunteering, or, as is the case for many women, unpaid caring for the next generation or the last.

I really believed that we were "All in this together"; all part of this family that was the United Kingdom. I respectfully suggest, to those of you who believe you are an individual who stands on your own two feet, with no support from the state, that you are deeply mistaken. Despite the damage inflicted on this country by successive governments, none of us could do without the broader aspects of the Welfare Society: a free-at-the-point-of-use NHS, a free, state education, a state pension...

You may say "Oh, I don't need the NHS. I have BUPA", but you still rely on the NHS to train your doctors and nurses, and to provide emergency medicine. Turn up at a private hospital with a heart attack or meningitis and you'll soon discover how much your private insurance is worth. Contract a rare disease, or a complication to your private surgery, or simply run out of money from having had too many things wrong with you  within a fixed time period. And I needn't go into into details about the perils of elderly care provision, even if you are paying for it.

With education, you may feel you don't need the state. You may wish to send your child to private school.  But have a disabled child, as I had, and you'd never be able to afford fees twice, three times, four times as much as Eton to pay for appropriate special education. Have one more baby than you planned for (that happens more than you might expect), or have twins and suddenly your finances don't look so rosy.

And these days, we all hope we have provided for our pensions but what if we invest in the wrong scheme or the wrong bank? Remember the Maxwell pension scandal? Or what happened to those who invested in Iceland? For many of us, the state pension is there to save us when things go badly wrong.

And all this is, of course, assuming you can earn enough in your life to pay for all the private this and private that. The fact is, only very few people can afford to be independent of the state, and invariably that is as much luck as judgement. I do not believe it is a coincidence that a government made up of millionaires, (mostly white, male millionaires), with largely inherited wealth, fails to understand (or care) about these issues.

We need the state to provide for us because we are not all able to be "hard-working families". My son is autistic. I have hope, but it is possible he may never work, and he will always need support, including special education. My mother lost her sight in her 30s. She managed to keep working for a few years after that, with support (benefits that helped pay for taxis and buses and ludicrously expensive equipment like talking computers), but eventually she was pushed out. It takes a rare employer to support someone with a disability. A few years ago, I was diagnosed with a rare, connective tissue disorder which causes me pain, fatigue and a constant risk of injury. My disability put paid to any ambitions I might have had about returning to work when my son was older.

To put it bluntly: stuff happens. It's no one's fault, but I always believed we lived in a country that provided a safety net. However, this government doesn't seem to believe in safety nets, as illustrated by the NHS Bill and by the way disabled people are being thrown off benefits. Many are 're-assessed' as fit to work, even against the advice of their own doctors. Take the example of a quadraplegic friend of mine, assessed as suitable for work-experience in Primark - a situation that had its funny side, but only because she wasn't under threat of having her benefits stopped - yet.

And the tragedy is, all this has been possible because the Liberal Democrats have allied with the  Conservatives, deluding themselves that this was a way to get power. So when I heard of  Lib Dem MP's drinking champagne the day the NHS Bill was passed, I was both sickened and depressed by the whole inevitability of it. Isn't it always the way when you do a deal with the devil?

'Liberal Democrat' is a misnomer. They are no longer liberal because, whatever the dictionary said, I had always believed 'liberal' meant open, progressive, generous. They are no longer democratic because they went against the wishes of the majority of voters in this country. Instead, they became king-makers to a viciously right-wing, Tory government, whose policies, no one seems to want (not even the right-wing press, it seems). They, the leadership, have also gone against the vast majority of Liberal Democrat rank-and-file members. Although perhaps the relative silence of the members reflects their true opinions? I wonder how many are like me, ranting and raving on the Internet and sending pointless emails into the ether, in reply to triumphalist party circulars?

I feel betrayed by this government and betrayed by my party. And wondering what it takes in this country for the people to be truly heard? Especially the people who don't have money, and can't do paid work and do need more help than the average i.e. those of us outside the "Hardworking family" catchment.


Update (Autumn 2015): Shortly after I wrote this blog, I resigned from the Liberal Democrat Party. I realised they did not have the same values as I did, and spend some years unsure of what to do next.

But having a degree in politics from the Open University, I continued to be interested. I did a lot of reading. I talked to a lot of people. And this September, I joined the Labour Party.

I was a few days too late to take part in the leadership competition, but Jeremy Corbyn caught my eye. He was saying the sorts of things I already believed. In the previous year I had increasingly identified myself as a democratic socialist, and the things he was saying were socialist. He spoke of the uninevitability of poverty, of human rights and justice and I had to agree.

But what finally lead me to put my money where my mouth is, was hearing ordinary Labour members talking on social media and on the TV, and realising they thought like me.

Immediately I joined, I bought tickets to the Labour Party Conference, which I will blog about later. I finally feel I have found my political home.