Misogyny

The horrific abuse I see aimed at women on twitter makes me ashamed to be a man. Seeing these vile messages as well as reports from friends about what is said to them in the streets everyday has opened my eyes to what happens to women elsewhere. There is a huge problem in society with sexist abuse and rape threats which is made particularly obvious on twitter. The problem is amplified because twitter is a massive global platform such that one person can be attacked through thousands of tweets for hours on end. Even so, I think twitter just makes the already-present abuse visible for all to see.

Abuse can be reported to twitter by email but it’s useless in the face of an onslaught of thousands of rape threats. I’m not convinced that a report abuse button is any more practical than attempting to reply to the abuse is though. People already misuse the report spam button to attack people who they disagree with or who call them out and make them angry. Accounts representing oppressed minorities get suspended all the time because people click report spam when they don’t like the message.

I’ve seen friends get suspended for annoying people by being women, or black, or trans, or gay, or disabled, and I’ve seen friends drown in threats of rape and violence and demands that they kill themselves – going on for days at a time after just one unfavourable mention by a celebrity.

So what is the solution? I don’t know. It’s complicated. The answer is not “just block them” as so many clueless people advocate. When the abuse is relentless and from hundreds of people there is no escape by that route. The answer is probably not a report abuse button. Twitter do provide information on reporting abuse in the Twitter Help Center but it is fairly tedious and is not practical to report everyone involved when under attack from many people. A button could speed things up but would face the same abuse as the report spam button and even then might not be practical for handling a lot of people at once. If such a scheme were to be implemented then twitter must make sure that it would not itself be used to attack people.

The answer certainly isn’t to charge for twitter, as suggested by some journalists. Charging would exclude millions of people who live in poverty both in rich and in poor countries. It would exclude a great many sick and disabled people who rely on twitter to keep them in touch with friends. Asking twitter to charge comes from a position of pure privilege.

Society needs to change. Men need to understand that it is unacceptable to throw sexual demands at women in the street or to tell them on twitter that they are going to rape them. It is not acceptable to stand by and let this happen either. Us men who do understand this need to speak out and tell those others that this behaviour must stop.

 

Twitter Help Center: Reporting Abusive Behavior

The Everyday Sexism Project – Many examples of unacceptable abuse.

Some examples of tweets aimed at Caroline Criado-Perez following her campaign to keep women on banknotes:

http://iwillnotputupwiththis.blogspot.mx/2013/07/twitter-land-of-brave.html

http://iwillnotputupwiththis.blogspot.mx/2013/07/and-they-just-keep-getting-braver.html

http://iwillnotputupwiththis.blogspot.mx/2013/07/more-misogyny-now-with-side-order-of.html

When is Tesco not Tesco? When you’ve got a broken phone.

Samsung Galaxy S3 with a cracked screen

Nine weeks ago I bought a Samsung Galaxy S3 with an O2 contract from the Tesco Phone Shop in the Evesham branch of Tesco.
A few days ago I suddenly noticed a crack running along the right edge of the screen, from about a third of the way down to a third of the way from the bottom. It’s barely noticable viewed from the front, but when viewed from the side, like when I lay it on my bed with my head on the pillow, it’s right in the way and distorts the text. I checked online and found that quite a few people have reported cracks in the screen of this model without any drops or impact, which means that this is almost certainly a manufacturing defect.

Today I went back to the Tesco Phone Shop and asked for a replacement. I was told that since I bought the phone longer than 28 days ago, they would not replace it but they could arrange for it to be sent away for repair. I insisted that this was not acceptable since it was within six months and it was the retailer’s responsibility, and I asked to talk to a manager. Unfortunately that manager was completely unable to do anything despite wanting to help because the Tesco Phone Shop is not actually part of Tesco – it’s run by 2020 Mobile.

Tesco paperwork showing an email address at 2020 mobile
Buying from Tesco? Look again.

I believe the law says that a defect arising within six months is assumed to be a manufacturing defect and is the responsibility of the retailer to fix. I do not want to send my phone away for repair since (a) I don’t want a repaired screen, I want a pristine product that looks like it is nine weeks old and (b) I would have to be without the phone for days, probably weeks. The S3 takes a Micro SIM which will not fit in any spare handset I have access to, including any that the Tesco phone shop offered to lend me.

I didn’t particularly want to bring up disability, but I also explained that my phone is often the only way I can communicate when I am at my sickest and can barely move in bed. The Tesco manager offered to lend me a phone (Not a smartphone) and a SIM which would at least let me call and text but I would still be unable to access the minutes, texts and data that I pay for.

Samsung Galaxy S3 with a cracked screen - switched on

So now I have a phone with a broken screen which the retailer refuses to exchange, and I didn’t buy it from the retailer that I thought I bought it from but from another who tell me that their computers won’t let them exchange it.

Update: I’ve received the following message from Tesco, which I will follow up when I have the energy for a phone call.

https://twitter.com/tescomobilecare/status/303577352779206656

Banks and benefits

I recently applied for a new credit card. Not because I want more credit, but because I have a credit card at the moment which is carrying more than a thousand pounds of debt and charging me 34% APR for it and I want to move to a cheaper card. I’ve had that level of debt for years now no matter how hard I try to pay it off and I’m certain a large part of that is paying a third of the balance a year in interest charges.

Applying for credit while living on benefits isn’t straightforward. First off, you have to specify your occupation. I’d love to reply “working full time managing my illness” but that isn’t an option. As someone who cannot work I resent having to select “unemployed” from the list. Some people have suggested that the correct option is “retired” but if so then the banks have not said this anywhere that I can see. I’d really like the banks to clarify what someone who cannot work should chose, or add an option to specify that.

The larger problem is working out what income to put and how it is arranged. Do all benefits count as income? Are some excluded because they are less likely to continue? Is DLA excluded because it covers costs that other people don’t have? Some benefits are paid jointly to a couple, how do you divide that up?

In my case, I receive Employment Support Allowance and Disability Living Allowance. My wife receives Carer’s Allowance. We jointly receive Housing Benefit and Council Tax Benefit. It’s quite hard to know which of those count as income in the view of the bank.

I would like to see the banks add an option to the list of occupations for people who cannot work due to sickness and disability, and I would like them to clearly state what benefits count as income and how to divide them up.

Asperger syndrome

I’ve always been a very isolated person. I spent much of my childhood immersed in books of a level far beyond that appropriate for my age. I have never been comfortable meeting new people or in new situations, I had very few friends at school or college, and struggled to maintain any close friendships. I struggle with small talk, finding it difficult to know what to say and often end up with awkward silence around other people. The friends I have known have nearly always been computer geeks and the topics of discussion technical rather than personal.

A few years ago I began to notice something. My social circle was full of scientists, computer geeks and similar people. Many of  them had various problems fitting in with “normal” people too. Some of these problems were attributed to depression and anxiety but a couple of my friends were diagnosed with Asperger’s syndrome which is an autism spectrum disorder. I realised that I had some similar problems to these friends but as far as I was concerned I had managed to grow up, get through school and university, find some friends, and get married so I didn’t need to think about it. I functioned.

Then I came across the Autism-Spectrum Quotient. The AQ test asks fifty questions related to social interaction and preferences and gives a score which can identify those who may be affected by autism spectrum disorder. Here’s the introduction given for the test when it was published in Wired magazine in 2001:

Psychologist Simon Baron-Cohen and his colleagues at Cambridge’s Autism Research Centre have created the Autism-Spectrum Quotient, or AQ, as a measure of the extent of autistic traits in adults. In the first major trial using the test, the average score in the control group was 16.4. Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher. The test is not a means for making a diagnosis, however, and many who score above 32 and even meet the diagnostic criteria for mild autism or Asperger’s report no difficulty functioning in their everyday lives.

I took the test and scored 32 which is about the level where it could indicate a problem. I still didn’t worry about it since I still functioned; albeit not very comfortably around new people, or when out at clubs or parties unless with my friends with similar issues. Since then though, I have come to realise that these issues were more of a problem than I realised. I would often find myself unable to cope with people and would cancel things at the last minute, preferring to stay in with my computer. I had some very awkward times when out for the evening, ending up in silence for half the evening sitting alone in a corner unable to go and talk to people. I realised that I had only reached the level of social interaction that I was at because in the past I had been forced to talk to people through church, then at university through the Christian Union, and then been introduced to people by my wife. I had learnt some social skills because I had to. A couple of years ago I joined twitter and started to talk to people about illness and politics. After meeting a few people that I knew through twitter I realised that I had a much easier time talking to them because I had already got through the parts that I struggle with by chatting on the internet first! I now have far less anxiety about meeting people in person as long as we know each other through the internet first.

There still wasn’t enough of an issue to follow up with any medical professional but I became severely depressed in late 2010 and have been seeing a psychiatrist for a year or so now.  My anxiety has increased to the point of panic attacks at the thought of going out around people, and doing things like driving to a destination but then being too anxious to leave the car. I knew people through twitter who have asperger’s and autism and chatting to them in the last few months made me realise that there could be significant crossover between Asperger’s and the anxiety which I have been trying to deal with. I re-took the AQ test and scored 39 – a score which I am sure has been boosted because of my depression and anxiety. A conversation a few weeks ago made me decide to raise the issue with my psychiatrist.

I was worried that what I said would be dismissed as hypochondria but to my surprise the psychiatrist agreed with me that I needed to address this and that doing so could well help me to deal with my depression and anxiety. He asked me questions about a few other things, which brought up problems with understanding speech, understanding anything at all in loud environments, being isolated and in my own thoughts in the middle of conversations, issues with being touched, obsessiveness, trouble dealing with changes and unpredictability. He has referred me to the Adult Asperger Service for a full diagnosis. I have received confirmation that I will be seen by the service but unfortunately the waiting time is sixteen months. Although that is a long time I am fortunate to be able to see them at all. I know that in many areas it is nearly impossible to get a diagnosis for Asperger’s as an adult. The National Autistic Society recognises that many people will be self-diagnosed because they cannot see a professional to confirm it.

In the meantime I have decided that I can’t wait sixteen months to try to start dealing with this and so I need to do some research of my own and find ways of coping with the issues caused by asperger’s and ways to identify what of my anxiety might be caused by that. I need to learn to understand this more and live with it so that maybe I can start to work on getting rid of my depression.

My thanks go to all the lovely people who have chatted on twitter about it with me.

This is a great article about adults with Asperger’s: The Hidden Autistics – Asperger’s in Adults

You can Take The AQ Test for yourself if any of this sounded familiar. I also made a record of one of my conversations on twitter about autism.

There is lots of information at the website of The National Autistic Society.

 

Parking bay badge blues

The following is a guest post by Christine Sumpter. (Yes, she is my mum!)

My husband has a blue badge and a Motability car. He has a badly damaged spine and scar tissue on his nerves. Yes, sometimes he can walk without the aid of his stick, with a pronounced limp and the ever-present danger of stumbling or his leg giving way completely. He is stubborn and often walks more than he should, choosing to ignore the pain. He gets ‘looks’ from other disabled parkers, particularly older people, mainly because he doesn’t look very disabled and he looks like the proverbial ‘plumber with a bad back.’ Actually he is an ex-plumber with a severely damaged back. And how can anyone tell from looking how much pain he is suffering?

There seems to be a common misunderstanding of the nature of mobility problems. Our local supermarket has located the blue badge parking spaces on both sides of a central walkway extending nearly to the far edge of the car park. It seems that they are under the misapprehension that all disabled parkers are wheelchair users and can manage the distance. Disabled people who can walk (after a fashion) also need to be able to open car doors fully and, more importantly, need to park near the building. The supermarket put a metal bollard in the centre of the crossing place from the car park, and it had to be pointed out to them by a friend of mine that her blind (and lame) husband kept falling over it. In icy conditions the path is gritted but those vital areas between the bays are not, neither is snow cleared from them.
There does not seem to be any policing of disabled parking bays so that on rainy days most of the spaces near the building are occupied by anyone who doesn’t want to get wet, leaving the people entitled to parking there to make the long, soggy trek from the other end of the walkway. And the disabled parking bays are used as an unofficial staff car park for the night shift, presumably because they think that disabled people don’t go out after dark.

 

In which I ramble on about how much I liked #QEDCon

Well that was QEDCon, and it was good.

For those who don’t know, QED stands for Question. Explore. Discover. QEDCon is a conference about science and other interesting stuff for people with a sceptical view of the world. I was lucky enough to get a free ticket courtesy of Chris Hofstader via Hayley Stevens otherwise I wouldn’t have been able to go.

Despite a horrible journey full of wheelchair-access cock-ups, broken trains, delays and my power wheelchair breaking down, I made it to Manchester only three hours late on Friday night and still managed to meet up with @Jules_Clarke and @Karenatetories (Who weren’t going to the conference) and @living_as_if and @Baggelboy. (Who were.) Later on the Friday night I saw @JenClone who I have met before, and @girlonthenet introduced herself to me. I finally got to meet @Psythor and @sillypunk of Pod Delusion fame, as well as @kashfarooq. On Saturday night after trying for constantly to meet for 24 hours I managed to see @LudditeWebDev and then @Tannice_. (You would think being at the same conference, it would be easy to meet up!) On Sunday I unexpectedly bumped into @RogueStardust and Thom who had realised late that QEDCon was just down the road from them. I was also introduced to @TheCharmQuark just as the conference finished.

Amazingly I managed to get up on Saturday in time to have breakfast and be in place for the start of the conference at 9am, despite how tiring my journey was. This has been helped by my sleep pattern being relatively normal at the moment.

The start of QEDCon
The start of QEDCon

The first talk of the day was about werewolves. I hadn’t expected it to be interesting but it turned out to be a fascinating run through the history of real-world beliefs in werewolves, from people who believed they actually were werewolves to people who were accused of being witches who performed rituals to call on the devil to turn them into wolves.

Deborah Hyde talking about werewolves at QEDCon
Deborah Hyde talking about werewolves at QEDCon

The second session looked like a bit of a rehash to me, covering evolution and creationism so I decamped to the breakout room for panels on Cryptozoology and then Science vs Skepticism. I spent lunchtime with James and Liz of Pod Delusion fame, eating an extremely expensive sandwich from the hotel bar because I didn’t have cash on me to buy a cheap sandwich. In the afternoon I was back in the breakout room for sessions on Mediums and Psychics, Skeptics Beyond the Pub, and then a live recording of The Pod Delusion. I was late for the first session as I had gone via my room and since Karen was out shopping I had no one to push my manual chair and I attempted to self-propel which meant I had to rest when I got there. I arrived at the packed session half an hour late and would not have even attempted to get in but conference volunteers made space for me and ushered me in anyway.

I found the afternoon sessions very interesting. The first panel talked about combating the harm done by mediums and psychics and mentioned the threats of libel lawsuits against people who said anything publicly about that. Simon Singh joined in from the audience too. The second panel talked about interaction between skeptics and some of the people whom they tend to annoy with more talk about libel cases. I found it interesting that in both sessions people talked about ways to engage people with opposing views and how to show people that they may have been deceived, and in both sessions the panel and audience emphasised a more gentle approach than skeptics are known for with less conflict. The Pod Delusion live recording was brilliant and thought provoking, I can recommend listening when it comes out.

I nearly didn’t make it to the evening entertainment. I tried to go out for dinner but I was just so tired and went to bed instead. I made a decision at the last minute to go downstairs for the comedy and since they were running late I also caught the end of the Skeptic awards and saw The Pod Delusion receive the award for best podcast! I was right at the back and actually in the room behind the main hall, just behind the doors. I managed to see and hear most of the comedy but there were quite a lot of immensely annoying people talking loudly both next to me and at the tables in front of me at the back of the hall, and they made it very difficult. Apparently they were so loud that people at the front of the hall were getting annoyed by them.

QEDCon Saturday night entertainment
QEDCon Saturday night entertainment - from the back
Paul Zenon
The largest round of applause of the night was for swinging a glass of beer around on a wooden triangle without spilling it!

Despite staying in the bar until 1am talking, I managed to be back in the hall ready for 10am on Sunday morning. I found the first talk by Edzard Ernst to be really informative. He has been conducting proper research into alternative medicines for decades and had some amazing insights and anecdotes about it.

QEDcon Panorama

I also unexpectedly enjoyed the talk on UFOs and their history. After that I spent the day with @RogueStardust and Thom who turned up on the Sunday when they realised that the conference was just down the road from them. We heard from D.J. Grothe on How to be a Bad Skeptic (Or a good one if you do the opposite of what he said!) and I was pleased again to hear mention of inclusiveness and less confrontation. There was a rather distressing and eye-opening talk from Maryam Namazie on Secularism, Social Cohesion and Citizenship which highlighted the need for secular state in many Muslim countries for the sake of freedom of religion as well as freedom to have no religion. The final talk was a run through by Joe Nickell of paranormal cases that he had investigated. I personally didn’t find it very interesting but most of the conference were quite happy for him to overrun.

And that was that. Conference over, I was too exhausted for socialising afterwards. I was disappointed that I couldn’t stay for Skeptics in the Curry House too, but we had to catch a coach. I really enjoyed the conference and I definitely want to go next year. (Better start saving!)

Some pictures by @Your_FunnyUncle

Where does morality come from?

Moses - St John's, Wall, Lichfield, Staffordshire.

I was a Christian for most of my life but these days I am an atheist. I wrote about that journey on this blog a few months ago. Following the “militant secularism” accusation by Baroness Warsi recently a friend asked me to consider how to arrive at an idea of what is moral or immoral without deriving morality from God. He went on to mention it on his blog and also mentioned a paper published in the Journal of Medical Ethics called After-birth abortion: why should the baby live? which has caused some controversy recently. In Phill’s own words:

The problem with that – with respect to the governance of this (or any) country, is that I think theism in general and Christianity in particular provides the only sound, rational foundation for any kind of ethical system. […]

Let me try and explain: in atheism, you don’t have many options for morality. I’ve heard a few different explanations, including reading an interview with Richard Dawkins the other day when he explains that morality comes from the cultural ‘Zeitgeist‘ (his word) – in other words, what people think is right and wrong at the time. But the general principle is that there is nothing objectively right and wrong – in other words, ‘right’ or ‘wrong’ are simply labels which we have almost arbitrarily come to define in a certain way. That definition may well change in the future.

Now this isn’t a new question and it has been addressed by people far better informed on the topic than I am, so consider this an exploration of my own thoughts and not a precise statement of what I believe.

There is no doubt in my mind that my idea of morality does come from nurture not nature; it is a product of my life to date. Like many other things, it is something that was influenced by my parents and by the way that they brought me up, and by the people around me, and by what I saw on the TV. (Although we didn’t always have a TV when I was young.) It was influenced by what I got away with doing and what I was punished for. Of course the way that everyone around me behaved was in turn shaped by the same things in their lives, in a chain as far back as humanity goes. The way that everyone around me behaved and viewed my behaviour is also influenced by their religious beliefs.  My parents are Christians and so that shaped their decisions and it shaped what they told me was acceptable. Since in turn my parents where brought up by Christians it is clear that societal values and religious values are intertwined and impossible to separate, or even to judge the total influence of each.

But there are factors apart from that, internal factors. If I behaved in a way that upset others then I would no doubt observe the effect that had on them. When a very young child hits their sibling or takes away the toy that they want it normally leads to upset and crying, and experience of having been in the reverse of the situation should lead to empathy and understanding. That doesn’t guarantee changing behaviour to avoid upsetting other people.

A possible explanation of ethics and morals is that they give an evolutionary advantage. In an article in New Scientist in 2007 Evolution: Survival of the selfless [New Scientist] the authors present the idea that group selection – a theory previously rejected by the mainstream – could be responsible for altruism both within and between groups. The article sums it up as:

“Selfishness beats altruism within groups. Altruistic groups beat selfish groups. Everything else is commentary.”

– New Scientist 03 November 2007, David Sloan Wilson and Edward O. Wilson

So we could conclude that morals come from this evolutionary advantage, either instinct or something that emerges from society or both. We could also be moral because we can empathise with others, and therefore treat them the way in which we would like to be treated. There is also the way that our actions are perceived by others. As much as some people might want to beat up someone who insulted them, or to murder someone and take all their possessions, that is not behaviour that others will accept. We lock up people who murder and steal because the rest of us can see the impact of those things on everyone else. We fear being murdered, so we collectively abhor murderers. Some people would still commit murder if they thought that they could get away with it, but most people would not, perhaps because they have absorbed the idea of treating people as they want to be treated at a deeper level.

Going back to Phill’s argument quoted earlier, I think the idea that you can’t be moral without God relies first entirely on the idea that there is a God at all. If you don’t believe in God but you do believe that humans follow a moral code of whatever kind, then you must conclude that you can be moral without God. The existence of morals isn’t an argument for the existence of God either, since in the opinion of an atheist, the values taught by religion or written in the bible are simply a product of society at the time that those values were set, and as such these values are simply a more rigid expression of the values that are passed down through society anyway.

I understand the revulsion at the idea that there is nothing objectively right or wrong, but revulsion at something does not mean that is not the way things are. It is very clear that values and morals do change radically over time and between societies. The desire for God to provide an absolute moral base does not call God into existence except in the minds of those who wish it.

In the end it is the actions of people which will shed light on this argument. Yes, there are people who don’t follow the morals that most people do, but it is important to note that they as often from a religious background as not. There are some people who might think that killing babies under a year old is acceptable, but the vast majority of people are utterly revolted by the idea, whatever their religious beliefs. (And I think that the paper which presented this idea is an academic exploration of the ethics of abortion rather than a call to murder babies.) Most of the atheists that I am in contact with also like to be nice to others and dislike people who are nasty. To these people, to suggest that they cannot have morals, or that their morals only come from someone else’s religious beliefs somehow, is quite insulting. There are many millions of atheists, some formerly religious and some not, who do not go around stealing and raping and murdering just because there is no God.

How am I? A personal update

Sometimes it’s easy to forget that this is my personal blog. I have written so much recently about workfare, welfare reform and politics that I haven’t had time to write about anything outside of those. I have always found it useful to write down what I have been going through, to help get my own thoughts in order and so this is one of those blog posts.

A handful of pillsIn the last few weeks I have been trying reboxetine in addition to the escitalopram I was already taking to try to reduce my panic attacks and anxiety. Two days after I started taking reboxetine I spent a day in the worst depression that I have had for a few months and was suicidal as well as being really really horrible to my wife. This is always a possible temporary side effect with a new anti-depressant and fortunately I was much better after that. The new medication did seem to be working for a couple of weeks but in the last week I have had two big meltdowns, panic attacks leading into spiralling depression again.

Since referal to a psychologist seems to be rare and slow in my area, last week I started to attend a cognitive behavioural therapy group which I have been waiting to start for a few months. CBT (and I may be wrong here) appears to be a way to learn to see and understand the problematic thoughts and moods, and then provides a method of changing them. CBT is currently the most popular therapy for depression and anxiety. It isn’t without problems, and it isn’t for everyone. One person said to me today that CBT is “feels like brainwashing” and I think he is right, but it is self-brainwashing.

CBT has a bad reputation among patients with M.E. because many psychiatrists believe that M.E. is a somataform disorder – that is, they believe that M.E. is a set of physical symptoms caused by mental illness. Now this isn’t impossible in some cases, although I think in most cases it is unlikely given that people with M.E. can often overdo things on a good mental health day and still find themselves stuck in bed for days recovering from their exertion. More common is that depression arrives after and as a result of becoming sick with M.E. Anyway, since M.E. is a physical neurological illness which can be partly controlled by pacing and learning when to stop, the common fear is that CBT teaches M.E. patients to push themselves too far and end up enduring serious health repercussions. This bad reputation of CBT for people with M.E. is the reason why I changed my psychiatrist and checked that the CBT group wouldn’t attempt to interfere with my M.E.

Although this group is officially a CBT group it seems to be more than that.  We will be taught how to use CBT and Mindfullness, and we are working through a book called Mind Over Mood. (Affiliate link.) We are being taught some helpful things alongside that too. The group meets for two hours per week over twelve weeks and there are six of us, plus a psychologist and a community nurse. Group therapy provides the chance for us to support each other too and I have already found this useful in the first two sessions. While Twitter has been a lifeline by allowing me to be in contact with a lot of people in similar situations it is nice to discuss these things in person. (And I might be dragging some of these people on to Twitter!)

Apart from the depression and anxiety taking a turn for the worse again my M.E. has been significantly worse for a while. I currently can’t walk very far at all and have had to use my wheelchair a lot when going out as well as rely on my dad to drive me to medical appointments. I have been stuck in bed for the majority of most days because sitting in a chair is extremely draining. Unfortunately the two hours I have to spend at each CBT group session is very draining and I have had a lot of pain since yesterday’s session.

So things aren’t so great at the moment. Despite that, I am looking forward to going to QEDCon next week and then spending a week staying with my sister. When I get back I hope to collect my new car which I hope will allow me to leave the house a bit more often. I will finally be able to stop relying on my dad to drive me around and I also intend to start going swimming when I can drive myself to the pool, and to take a few trips to meet friends around the country. I just need to build up some strength for that one.

Lessons from a troll

My experiences in the last couple of days have highlighted a few things.

It is hard to tell the different between someone who is saying things just to provoke you (a troll) and someone who genuinely believes what they are saying and is trying to convince you. Sometimes they believe what they are saying but are still trying to provoke a reaction for their own amusement. Indigo Jo Blogs sets out a case that this kind of trolling is simply bullying in RIP trolling isn’t the worst kind. Some people are of the opinion that telling people with M.E. that their illness isn’t real and that they don’t deserve help is actually gaslighting – a form of abuse through making people doubt their own minds. This kind of approach seems common in politics as Lisa Ansell wrote in Trolling as political debate.

Many on the right of politics believe that welfare should not exist. Instead they believe that individuals should have savings and pay for their own insurance privately to cover them against unemployment and being unable to work through illness and disability, and for healthcare. The problems with this approach are many but it seems impossible to convince proponents of the idea that it will lead to suffering and homelessness, or perhaps they just don’t care about that.

There is still a big problem with people believing that ME and Fibromyalgia are somehow not real or are minor or trivial. This has been fuelled by articles and blog posts from tabloid papers. Both are defined as neurological physical diseases by the World Health Organisation but this is irrelevant in deciding if they are real anyway – even if they were caused by mental health problems at the core they would still be just as disabling. It is an absurd suggestion that anyone would want M.E. or would voluntarily stay in bed for most or all of the day, every day, in isolation, or voluntarily use a wheelchair or a walking stick all the time when going out. These would be stupid things to inflict on yourself for the benefits available, if you even manage to get them.

Some people seem to believe that if they can work through their illness or disability then anyone who does not work must simply not be trying hard enough. They seem to have no understanding that the amount a person is affected by a particular health problem can vary massively between different people and different problems. It seems inconceivable to them that an invisible illness could be more disabling in its effects than a cancer or surgery of some sort. They think that particular health problems, like cancer and chemotherapy treatment, are the ultimate in human suffering and that nothing else can be worse. I know a few people on chemotherapy and I know that it is a horrific experience, but it isn’t the only thing that can make someone so sick – especially if someone is on a low dose.

I captured some of what was said to me recently using Storify, embedded here. (Click here if it doesn’t show below after a few seconds.) Warning, it does contain strong swearing on my part where I got too frustrated to hold back.

Continue reading “Lessons from a troll”

Income of a benefit scrounger

Since an article in the Evesham Journal has published the amount of benefits that I receive without any explanation as to why I receive them or what they are  for, I decided to talk about it here. This is what my wife and I receive in benefits each week at the moment.

  • £158.55 Employment Support Allowance
  • £74.63 Housing Benefit
  • £18.35 Council Tax Benefit
  • £100.70 Disability Living Allowance
The Employment Support Allowance listed above is made up of three parts:
  • – £105.95 Personal Allowance
  • – £20.25 Enhanced Disability Premium
  • – £32.35 Support Component
The Disability Living Allowance listed above is made up of two parts
  • – £49.30 Mid-Rate Care Allowance
  • – £51.40 High-Rate Mobility Allowance

The ESA Personal Allowance covers my wife as well as myself. If I were not married then the Personal Allowance would be £67.50, however my wife does not claim Job Seeker’s Allowance since she is caring for me as a full time job. She has been told that she may still be required to attend a work focussed interview. She saves the council thousands of pounds per year in care charges by looking after me.

Our rent and council tax are not paid every week of the year. Total annual amounts are Band A Council Tax, £960, and rent for a one-bedroom housing association flat, 48 x 74.63 = £3582.24.

Disability Living Allowance is not a replacement for income. It is an extra amount to provide for care costs and to allow me to have some mobility by spending it on things like a wheelchair or a car. Our equivalent annual take-home income without DLA is £12,786.84 and with DLA is £18,023.24. If my wife were able to find a job as a science teacher then she would earn a salary of about £27,000 per year, which would easily make us better off after tax even without claiming tax credits, contribution-based ESA and DLA which we would still be entitled to. However, I would then need someone else to look after me.

I need to make it clear that although I am fortunate enough to receive full support for my illness and disability, a great many people do not. For an example, consider Sue Marsh who has one of the most severe  cases of chron’s disease in the country. She has had 7 major life saving operations to remove over 30 obstructions (blockages) from her bowel. She takes chemo-shots every two weeks that suppress her immune system, and exhaustion, pain and nausea plague every single day of her life. She has osteoprosis and malnutrition. She has had major seizures and a stroke. And yet she was inexplicably turned down for Disability Living Allowance.

My claims for ESA and for DLA were difficult and were always in doubt despite my severe illness. It has taken me well over a year to sort out secure housing and income, and on the way to that my wife tried her best to take any and every job available. Although she is a fully qualified science teacher she was unable to find teaching work (even supply teaching) and so took work cleaning and cooking whenever it became available. Because of the sporadic and unpredictable nature of this work we were overpaid housing benefit in 2010 and 2011 and repayments for this are now taken from us every week. We were also evicted from our privately-let home possibly because of our sporadic rent payments, and just about scraped into social housing because of my illness and disability. My health is so bad at this point that my wife has to look after me full time.

With the advent of the Welfare Reform Bill and Personal Independence Payments which will replace Disability Living Allowance things will get much harder. I am much less likely to get PIP, and the process to find out will be hard and will have a negative impact on my health. Between ESA and PIP I am likely to be reassessed far more frequently and with much less chance of being awarded the help that I need. I am very afraid for my future and worried that I will be put into the Work Related Activity Group and have my mobility and care allowances taken away, simultaneously requiring me to work but removing the last bit of support which might allow me to do so.

I hope that by making this information public that I will add to people’s understanding.