Where do we go from here?

The dust is beginning to settle, and everyone’s looking around slightly shell-shocked and wondering where to go and what to do next.

First, take a breath. Also I recommend a cup of coffee. This is a marathon, not a sprint. We have five years to try and get things changed, we can’t all exhaust ourselves in the first two months.

Second, take a look at the #wecantmarch hashtag on Twitter. Sick and disabled people (as well as anyone who, for whatever reason, is unable to physically march) are creating an online space of protest to match the physical movement of people. Feet on the streets is brilliant and a very effective way of showing the strength of anger but not everyone can do it. So what can we do? Here are some ideas.

  • Read. Educate yourself. Learn about poverty, inequality, austerity and injustice. Learn why this is bad, so you can give educated and informed answers to people, as well as yourself. There are so many books out now around these subjects – you may not agree with all of them, but knowing why you disagree with something is just as important. Visit your local library, if you live in Bristol I heartily recommend Books for Amnesty on Gloucester Road as they have an extensive amount of books on these issues for a few quid each. If reading is a problem, have a look through Audible and see what audiobooks you can find. You can also get audiobooks from your library, either in physical form or electronic. Read.
  • Find your interest. We cannot all be experts on everything. The state of the country is complex and brings into play a lot of different issues. While you can be reasonably informed about most of them, you cannot know everything about all of them. Find the issues that you feel most strongly about, or maybe one that you already know about as you’ve worked in the field or studied it before. For me, it’s youth work. I’ve worked as a youth worker for ten years and I’m doing my MA in it – I like to think I know what I’m talking about. Know what your speciality is, and don’t be afraid to link people to other websites of people who have specialities different from your own.
  • Pick your battles. The internet is a busy place. People argue everywhere. You do not have to argue with all of them. We have a limited amount of energy. There will be people who will not listen to your point of view, and to spend time trying to convince them is a waste of your energy. It’s ok to say “I am not getting into this right now, bye.” Also, as a rule, Facebook and Twitter are terrible places for arguments on the internet (with exceptions, of course).
  • Write. This one usually happens on its own after you’ve been doing the above for a while. Writing is a good thing. Sharing information you know, giving a space to put forward a clear argument (rather than trying to do it in 140 characters) and a place to write down the frustrations you feel. It also means you have a space you can point people to when you get into aforementioned Twitter arguments.
  • Do something else. This is important. Campaigning and protesting is essential, especially now, but you have a life and health to think of and they should always come first. Take some time out. Spend an evening watching a film, go for a coffee with a friend, binge-watch some Netflix. Give your brain and soul a break every now and again. Don’t be too hard on yourself.

Keep informed, keep active, but most importantly keep safe. Be angry, but look after each other. Be motivated but don’t exhaust yourself. Keep fighting.

Be angry.

It’s a sad, but I suppose not wholly unexpected, morning. At this point it’s almost certain that the Conservative Party will be governing the country for another five years. We all know what this means for the poor, the sick and disabled and the vulnerable. We know what this means for the NHS, education and welfare. The poor will get poorer, people will die, foodbanks will get busier and the rich will get richer.

So, this is when we really start the fight. We’ve campaigned and marched and shouted for five years and no-one listened. We need to make a louder noise. We need to get in the way. We need to make it very clear that we will not put up with this for the next five years.

Your MP is your elected representative in government. Make sure they know what you think. Government doing something you don’t like? Tell them how you think they need to vote. Even if your MP is the Toriest of Tories, tell them. Go and see them, write to them, make a noise. And tell everyone else you know to do the same.

Protest. Shout. Make your voice heard. Refuse to be silent. The media will put the disenfranchised against the poor, the sick against the homeless. They will tell people that you are scum, that you are not worth it, that you need to be quiet, that you deserve it. Do not listen to them. Be loud, be cross and be angry.

If we have to do another five years of this, we will fight. Don’t take it lying down.

Happy International Not-Men Day: men won’t disappear if you stop talking about them

Yesterday was International Women’s Day! And how did we know that? By telling everyone when International Men’s Day was.

This issue has been happening for a few years. IWD turns up and a bunch of people get miffed and ask “When’s International Men’s Day then huh? HUH?” The ideal response being “well, every day is International Men’s Day” but the literal response being “It’s November 19th”.

This year people were ready. They knew when IMD was, they were ready to tweet the date out, to say “Look, you DO have a day all to yourself as well! Don’t complain!” And that’s how Twitter spent most of International Women’s Day talking about International Men’s Day.

This happens a lot. Someone will write a Facebook post about how it’s International Women’s Day and give a shout out to all the amazing women they know, Someone will reply saying “And the men too!” It’s the same mindset of #BlackLivesMatter being turned into #AllLivesMatter – “don’t forget about me!”


An appropriate image for yesterday.

We know there are good men who do good things. But spending a day talking about women will not make those men disappear. It won’t make the good things they do go away. We just want to spend one day talking about something else: namely, women. If someone has a birthday and everyone gets them gifts, do you moan that it’s not fair because you didn’t get any gifts? No, of course not, you’re a decent human being. It’s not your day.

There’s a reason I didn’t write this blog entry yesterday. And that’s because I didn’t want to spend International Women’s Day talking about men. It isn’t their day. Men are very capable of standing up for themselves – we do not need to spend our day reassuring them that we know they still matter too. Men are capable of managing their egos enough so they don’t fall apart when we spend one day not talking about them. Women don’t have a duty to placate men with “it’s ok, we’ll talk about you soon I promise!”

So, next International Women’s Day, talk about women. Talk about how wonderful they are. Not talking about men for one day will not make them disappear. Women deserve to be talked about without reference to men. Pass the Bechdel test, ladies. Celebrate yourselves.

Happy International Women’s Day 2015!!

To be young and poor is a criminal act.

If there’s one group of people that have been repeatedly on the wrong end of the cuts, it’s young people. No more EMA, no more youth service. No more Connexions, no more jobs, no housing benefit and now, you’ll be put on workfare if you can’t find a job that doesn’t exist.

The idea is that 18-21 year olds will have 6 months to find a job. If they don’t manage to do that, they’ll be put on “Youth Allowance” (which, conveniently is the same amount as JSA – £57.35 a week) and be told they have to undertake 30 hours a week of community service. And 10 hours of job searching. £57.35 a week for 30 hours work comes out at just over £1.90 per hour.

According to the first thing that popped up when I typed “unemployment statistics young people” into Google, 740,000 16-24 year olds were unemployed in the period October to December 2014, 201,000 of which had been unemployed for over 12 months. Let’s take a random shot in the dark and say 500,000 young people would’ve been unemployed for 6 months and therefore required to go on the “Youth Allowance”.

Where do we find volunteering and community work places for 500,000 young people? For 30 hours a week each? Cameron suggests “cleaning litter or graffiti” at which point I think it’s very clear the meaning behind these new requirements.

The young people who are most likely to be unemployed for more than six months, who haven’t gone to uni, who haven’t secured an “unpaid internship” will be the most vulnerable young people from the poorest backgrounds.

To be young and poor is to be treated like a criminal.

Mr Cameron in his infinite wisdom, has made very clear what he thinks of young people. If you’re able to get the grades and go to uni (which we’ll charge you a fortune for) and get work then you’re a striver! You’re also much more likely to be middle class, not live in social housing and not have a family who are living on the welfare system. If your background is that way, well, we already know that you’re going to follow in their scrounging sponging footsteps, and so we’ll make sure you’re put in your place as quickly as possible.

“That well-worn path – from the school gate, down to the jobcentre, and on to a life on benefits – has got to be rubbed away,” Mr Cameron said. (BBC News, 20th February 2015)

This government has taken every ounce of support from young people with one hand, and used the other hand to point the finger at them and say “This is YOUR fault”. They have said “you’re not worth paying for work, you’re not worth helping because we have given up on you”. They have criminalised being young and poor.

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 6,800 times in 2014. If it were a NYC subway train, it would take about 6 trips to carry that many people.

Click here to see the complete report.

It’s not very helpful.

The last time I saw a specialist regarding my chronic illness was back in February. I saw a rheumatologist who diagnosed me with fibromyalgia. Which she then told me was the same condition as Chronic Fatigue Syndrome. (hint: it’s not.)

Last July I finally received a referral to the local pain clinic. I was very pleased as finally I felt like I could begin looking at managing my condition, and finding strategies to get life as back on track as I could. I waited four months for this appointment and went in with questions about diagnoses, about medication, about referrals to other agencies who could help me.

I spent more time sitting on the number 501 bus to the hospital than I did in the pain clinic.

I was told calling my condition fibromyalgia “isn’t helpful” and I should call it “widespread pain” instead.

I was also told I was ineligible for a referral to the M.E. clinic as they don’t take people with chronic pain.

Let’s deal with the first point first. Fibromyalgia is classed by the World Health Organisation as being a soft tissue disorder”. I’m aware that there is extensive debate happening about the accuracy of this but the fact remains it is recognised as a condition. Changing the name of the condition de-legitimises the patient. It says, “if we give you a medical name you’ll think you actually have a problem. So we’ll give you a symptomatic name instead.”

Moving on.

For the second point I’m just going to put this link to the M.E. Association here and quote the first paragraph under “The typical symptoms of M.E./CFS” that states:

Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain/myalgia (present in around 75% of people) and fasciculations (visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching).

Emphasis mine.

It’s at this point that I have to go and take a bit of a long lie down because the cognitive dissonance between professionals and departments astounds me. In February I saw a rheumatologist that told me I had fibro-which-is-also-CFS and last week I saw a pain clinic doctor who told me I had fibromyalgia “widespread pain” and I didn’t meet the criteria for referral to the M.E. clinic because I had a symptom that is present IN 75% OF M.E. PATIENTS.

I’m fully aware that those of you reading this who also have chronic conditions are probably going, “Bless her, she’s very new to all this, she’ll learn soon enough that you can’t get much out of doctors when it comes to chronic conditions”. I know. It’s sad, and I know.

But. I wanted this appointment to be the start of progress and in some respects it has been. I’ve been referred to the 12-week pain management course and I am going in with an open mind. Because at this point, what else can I really do?

A comedy of errors – the 28 page joke that is my PIP assessment.

Today I received the most entertaining and most depressing document of my life. The ATOS report for my Personal Independence Payments assessment.

You may remember I went for my assessment back in July. The guy who assessed me was really nice, he was relaxed and chatty and not like a driving examiner or someone terrifying, so I’m going to give him the benefit of the doubt and say that the document I received today was not due to his incompetence, but due to a broken system that does not allow people to do a good job.

Or spellcheck their documents, apparently:

“…she will manage to put out a bowel of cereal for herself.”

Right. Sounds…disgusting, really.

The guy was typing this as I watched so I know he didn’t try to type it with his head or with both hands tied behind his back.

“Has who cats”. I first interpreted this as meaning I had cats who were in the band The Who, until it was pointed out to me that it probably meant my cats were actually Timelords.

So yes, funny funny ha ha, until I realised that this document was about my life. This document was being provided to someone who would look at it and make a judgment on my quality of life. And there wasn’t even enough time to make sure it had proper spelling and grammar. In 28 pages I counted 31 spelling and grammar mistakes. And that doesn’t even count the sentences where I just thought “I have no idea what he’s trying to say here.” Also, typos can change the meaning of sentences. At one point it says “was the rheumatologist at the hospital” rather than saw the rheumatologist at the hospital” which, while you can say that the DWP knew what he meant, still completely changes the meaning of what’s being said!

The assessment report says that the nice man who conducted my assessment was a physiotherapist. About four pages later it then has a space where he describes what he takes my mental health to be, based solely on his observations. As a physiotherapist. In this regard I feel lucky – I do not have complex mental health needs. However, I do not feel that my physiotherapist assessor was qualified to make mental health assessments of me purely by observation.

I was also observed to have “no abnormal movement in the upper limb” which made me wonder at which point I’d misplaced my other arm.

I’d also contest whether being able to calculate change fulfilled the requirement for “able to manage complex budgeting decisions”

The following quote really needs no further comment other that I found it rather offensive:

“…was of more than average build. Therefore she has no significant functional restriction in relation to taking nutrition.”

So, other than misplacing an arm, changing career and being called fat what was the outcome of this assessment?

Well they assessed me as being able to plan and follow a journey unaided, which anyone who has ever been in a car with me will tell you is really not the case. I was also assessed as being able to walk more than 200 metres, which was proved by the fact I “parked in the multi-storey car a park for which walked from with 2 elbow crutches to the centre (110 metres)

(random sentence structure left in for your own amusement)

It also repeatedly states there is no restriction of movement in my upper limbs, which seeing as I have fibromyalgia and not arthritis, is unsurprising. Fibromyalgia is a pain condition. I can still move my arms around.

This document is ridiculous and laughable. A professional company that puts out assessments on people that will have a profound effect in their lives should not look like the document I was sent today, riddled with spelling and grammar errors, awfully written and completed in a hurry. I went into huge amounts of detail on my application form. The amounts of blank page on this assessment made me feel like this was not an accurate representation.

And it’s not the fault of the assessors. ATOS telling medical professionals to assess patients for things they’re not qualified to assess for. They send out assessment reports that look unprofessional and it just shows that they have no respect for the people they are assessing. They just want them through the door as fast as possible.


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