Oh, the irony

I was referred for an OT assessment back in April. I actually saw the OT just over two weeks ago.

One of the great many questions I was asked (the form had approx 17 pages) was about social involvement. I told him about volunteering for Citizens Advice. He asked if I liked it and we somehow got onto the topic of benefits advice. He mentioned that another service user he had been to see had shown him the medical report from their work capability assessment for ESA.

Being that for almost two years now I’ve been doing a lot of supporting clients through either the Mandatory Reconsideration or appeal processes for disability benefits I knew where that story was going. The medical report bore no resemblance to the service user’s actual medical condition/abilities.

The OT was shocked by that. I wasn’t. I told him how I often see things like “Emma can sit for an hour” or “Emma can concentrate for an hour” in reports and when you ask the claimant tells you they weren’t asked. Digging deeper often finds they were asked something innocuous like “did you watch TV last night?” and the assessor has assumed that “yes, I watched bake off.” Means they sat and concentrated for an hour. Never mind that they may have lost track of what was happening part way through and may not have sat to watch it.

The OT said he would tell the other service user that he should think about coming to Citizens Advice for some help. I hope he did, and they do. I’ll never know.

I got a copy of the assessment form in the post today. It contained some inaccurate information. One of the bits is marked as not applicable but I wasn’t asked if it applied to me (and it does).

Rather like the other service user’s work capability assessment.

File this under “you couldn’t make it up.”

Last Wednesday I got the news that I’ve been awarded ESA for two years. I’ve been put straight into the support group. It’s definitely the right decision and now I’ve had a chance to think about things and calm down I’m relieved its sorted and ok with it. But it’s not a comfortable place and if I’m completely honest I felt like I must be much more disabled than I realised.

I wrote more about that, the ESA process and how it relates to me over on Bea Magazine

And then yesterday I got a letter telling me about my DLA entitlement for this year. And all about how DLA is being replaced by PIP. I’ll be called for reassessment for that at some point.

So I just get to the point where I can stop worrying about ESA. And now they want me to worry about my DLA?! Fantastic*

I think you file that under “couldn’t make this shit up.”

*I’m not worrying about DLA because I have an indefinite award and the reassessment process for that category doesn’t even start until 2015 (meaning my ESA will come up for reassessment first most likely) but still….

Bad Mothers United by Kate Long

Feels like ages since I’ve written a book review. It actually isn’t on the grand scheme of things but its certainly been longer than I would like! I have a few coming up in the next week though so that should be good. There’s no real reason for the break other than I’ve not had much time for reading and also I chose to reread some favourite stuff instead of tackling new books.


Simon and Schuster sent me an advance copy of Bad Mothers United by Kate Long. And then I got chatting to Kate on Twitter and she kindly sent me a signed book plate.

This is the sequel to one of Kate’s earlier books, The Bad Mothers Handbook which I also read when it came out several years ago.

Here’s the synopsis:
Before Yummy Mummies and Slummy Mummies, before the Battle Hymn of the Tiger Mother, before we wondered How She Does It, there was The Bad Mother’s Handbook. Hundreds of thousands of readers lived a year in the life of Charlotte, Karen and Nan as they struggled with becoming mothers for the first time. And now they are back. Certainly older, probably not wiser, and definitely as hilariously catastrophic as before. For all those who have asked How to Be a Woman, here is How To Be…A Bad Mother.

Although I have read the prequel to this I was told it can also stand alone as a book. Which I would agree with. I did get a tiny bit confused at one point but that was mostly because I couldn’t figure out if something had happened in the first book (and if so how I’d forgotten it) or if it happened off screen between the two books. Thanks to the power of twitter Kate unconfused me. It happened off screen, in case you’re wondering.

I talk books a lot with various different friends and a few days mentioned this book to one of them. Who said she’d hated The Bad Mothers Handbook. That surprised me because I’d really liked it. She found the characters annoying and wanted to tell Charlotte to grow up she said. I found that interesting because I didn’t find that with The Bad Mothers Handbook but did find that I spent a decent sized chunk of this book wanting to tell Charlotte to grow up and both her and Karen to learn how to communicate properly.

I think when characters annoy you that much it’s a quite a good sign of how realistic and true to life they are. That went down as they book went on and events unfolded. It became more obvious why things were how they were and then it made sense.

This book takes place over a year and each chapter is pretty much a day in a particular month. I quite liked that format. We got a really good snapshot of key events (usually just a day but sometimes a couple) in that month and them we moved on to the next month skipping what could be a few days or a few weeks to get there. Which does mean that some things were building up and then it would skip to the next month and what came of it. It kept the story moving a lot and skipped some of the more obvious and possibly mundane moments like the fight about money I was sure Karen and Charlotte were building up to at some point. There was at least one point by the end that wasn’t resolved that I’d have really wanted dealt with but maybe they’ll be a third book and it’ll be dealt with then. It would make a brilliant plot.

Part way through the book Steve, Charlotte’s Dad and Karen’s ex husband has an accident and becomes disabled in a way that looks at though some degree will be permanent. The difficulties in sourcing the right equipment with all the bureaucracy and delays are shown in a good way and Karen also has to tackle the dreaded DLA form. The way it’s length (circa 39 pages with its own booklet to explain how to do it which if memory serves is almost as long as the form) and the questions are described is brilliant. That part alone could be used to highlight the true difficulties people have with that.

I would hesitate to recommend that however as a bit later in the book Karen discovers that a minor character has been committing benefit fraud. I was a bit angry about that because I’ve had to fight all my life to get all the help I need and claim benefits I’m genuinely entitled too. But the general idea is that we’re all faking to some degree and I worried that would help make reinforce that idea for some readers. But then I calmed down and returned to the book and discovered that actually it was handled brilliantly.

This book was one of those ones that keeps you reading. Not in an edge of my seat I can’t put it down type way but because I’d pick it up and the next thing I’d know is an hour’s gone by and I’ve read way more than I planned. It was a fun enjoyable read but as you can probably tell from my review it provoked some very strong emotions from me so if thats what you want, fantastic, But if a calming read is what you’re after I’d probably skip it.

For the love of a book

I love to read. This comes as no surprise to anyone who knows me or who reads this blog regularly I’m sure.

There’s just something about picking up a book and losing yourself in it. It makes me think, I learn stuff, it’s enjoyable. They make me laugh, cry and just feel. Sometimes I reach for a book as pure escapism and it also means as long as I’ve got a book or my kindle in my bag I can fill a few minutes waiting at the hairdressers or the doctors really easily and it makes the wait less annoying.

According to statistics 1 in 6 adults of working age in the UK find reading difficult or impossible. Quick Reads is a charity dedicated to improving literacy. They aim to show that books and reading can be for everyone. Each year they commission big name authors to write short books that are specifically designed to be easy to read. They are the same as mainstream books in every respect but are simply shorter and easier to tackle for adults who are less confident in their reading skills. The books are then sold through major retailers, online booksellers and are loaned from libraries. They are also very low priced – usually £1 – which makes them even more accessible.

I can’t imagine not being able to read. I just can’t.

Books are such a huge part of my life and so is writing. I don’t know what it would be without it. But the thing is the ability to read is about so much more that books. It’s about being able to read directions to places you need to go. How much and how often to take the paracetamol you just picked up. instructions for your new oven or even how long to cook that pizza.

If you can’t read and you get an official letter what do you do about it? At CAB often I see clients that need to check what a letter means or what to do with a form they’ve been sent. Some of the time it’s because it wasn’t written in plain English and they need jargon translating. We’ve all had letters like that where we think “I know what it says but I don’t know what it means”. Letters from the DWP are a frequent example. But often people who come in with a letter only have a vague idea what it’s about because of their literacy level or haven’t been able to read it at all.

Letters about benefits are very distinctive. They come in a brown envelope and the typeface peeking through the window of it is this one particular one that to me and I’m sure many others screams DWP. And “Doom!” to some. I know a letter is about benefits before I open it and as I’m currently awaiting an ESA decision I appropriate all brown envelopes with some apprehension and ones obviously from the DWP with more.

But I can read. I can open that letter and know what it says with as little or as much delay as I choose. Many people can’t. I can’t imagine what the fear of that letter would be like it if was multiplied by the time it took to find a friend or relative who could read it or to get to a CAB or similar that was able to help. I know an inability to read fluently has meant deadlines and appointments missed to some people – and potentially worse.

So when Quick Reads told me about their six new books for 2013 and asked if I’d like copies and to help promote their literacy work I of course said yes! I’d read a few before and knew they were very enjoyable and was intrigued to see what they had this year.

The six books are:
A Dreadful Murder by Minette Walters
A Sea Change by Veronica Henry
Doctor Who – The Silurian Gift by Mike Tucker
Love is Blind by Kathy Lette
Today Everything Changes by Andy McNab
Wrong Time, Wrong Place by Simon Kernick

I’ve been reading some of the books over the last few days and I’ll be posted a review or two later today.

There for the most deserving

This was a really good post in my opinion.  But wordpress ate it and it published blank with all the points I spent ages making gone off into the ether and not here on my blog where they should be.

It was about my friend who after being very ill, spending time in intensive care with multi organ failure, having nearly six months off work and being diagnosed with a life long condition.  And about how she’s new to the world of disability, support, benefits and all that entailled.  But already learning about not being “disabled enough”.  Being told by people that she should be able to get help but then discovering actually she can’t.

And it was about Karen Sherlock.  I didn’t know Karen but she was a disability campaigner.  She had diabetes, was visually impaired, was about to go on dalysis and was being considered for a transplant.  Karen claimed ESA and fought a long battle over many months to get moved from the WRAG to the support group.  ATOS considered her fit for work despite her many problems meaning she didn’t leave the house unless absolutely necessary and never alone.  She had medicals, filled out forms, there were many problems and mistakes a long the way and it was to put it bluntly a battle she shouldn’t have had to fight..

Karen eventually won that battle and was placed into the support group as she should have been originally.

She died two weeks later.

I’ve probably not made my points as well as I had in my original blog entry.  They certainly don’t have as much detail.  But I just wanted to welcome you to this new world.

It’s called Britain in 2012.  It’s a world where “the most deserving” get the help they need.  But where no one knows just who this “most deserving” group of people actually are.  And where some of us are beginning to doub they even exist.

>Melting Pot of Links

>It has come to my attention that I haven’t updated my blog in a very long time.  I have a lot to say! I also have to shower, change and eat in the next hour and three quarters. Doable but adding in a long catch up blog would be the straw that broke the camel’s back as they say.  So this is just basically to say that I’m still alive and doing well.  I’ll update tomorrow for Blogging Against Disablism Day and try to find the time to write a general update too.

For now however a few links I’ve found interesting lately.  These are a real mixture.

Make Change.  A very powerful post from Corey about depression.  She makes some very good points and I don’t think I could have written them as well as she did.

Tina Fey’s Prayer for a Daughter.  OK so I don’t have kids and I am a very long way from ever having kids but this seriously made me smile and laugh.

T Mobile’s take on The Royal Wedding.  I laughed so much the first time I saw this.  Who wouldn’t have absolutely loved it if they’d actually done that?!

Cheap Flights.  This song by Fascinating Aida has been doing the rounds on facebook for a while so you might have already seen it but just in case.  I listened to a couple of their other songs on You Tube and they rock as well.

Kirstie’s posts on Benefits and The Glass is Now Empty are tough reading but an honest account of how hard life with a disability and unable to work can be.

Who is the most deserving? by Sue Marsh will make you think.  I was a bit disappointed it didn’t included any life long disabled people but it’s still a powerful post.

>The Broken of Britain

>Last weekend a new campaign was set up about the proposed cuts and specifically to allow disabled people to campaign about them.  Because we are one of the groups who will be affected most severely by these cuts.  And the government have already admitted they’ve not looked into it fully.

The campaign is The Broken of Britain.

This afternoon I had a long chat on the phone with Kaliya who set it up.  It was really fun to get to talk to her after knowing her online for so long.  Just a shame we had such a serious topic to talk about.  I’m going to be helping with the campaign by doing stuff like keeping an eye on the blog and answering e-mails.

I also wrote a post for Scope on Monday about this project.  Spreading the word is one of the most important things people can do.  Even if you don’t feel able to share your story or take part in other ways, please consider sharing the link.

Reading the stories is humbling and it can be very hard.  I thought I’d seen a lot of benefit problems as a CAB adviser and knew how they could affect people.  I was wrong.

I just posted Emma’s Story – my own story – to The Broken of Britain blog.  It feels a little raw and it wasn’t easy.  I’ve shared some very personal stuff before through my blogs but this feels like a whole different level of personal and not overly comfortable. I thought about it for a long time and did consider being anonymous as those stories are also accepted. But I knew that if I wrote what I wanted to write and I continued to promote the project plenty of people would read it and know it was me.  Plus, if ever there was a time when I feel the need to stand up for what I believe in, it’s now.

Please consider supporting this project.

>More Nadine Dorries Twitter Fail

>Nadine Dorries made further ridiculous comments, this time suggesting that being disabled is the same as being retired and also that disabled people shouldn’t go down the pub.

I wrote another rebuttal over on Disability Voices. Twitter, Disabled People, Benefit Fraud… and Pubs

And DV team member, Sarah Ismail, has set up a facebook group calling for Nadine Dorries’ removal as an MP due to her disablist attitude.

Finally I must add that I personally am absolutely astounded and very touched to see the response my original piece on DV got, both on DV and also on Twitter.