All things bookish (@readathon October 2018)

Firstly, for those wondering about Blogtober (daily blogging in October) the story goes: got a bit depressed, some stressful stuff happened, got more depressed, sorted some of the stressful stuff, got a nasty ear infection that’s still gungy and sore (and probably goes someway to explaining my low mood) and then it’s today.

It’s the readathon today! I’m aiming low and hoping to finish one book (not sure what yet) and listen to a chunk of an audiobook. I also have a couple of books of essays/short stories so I might dip into those too. Well, that’s my sensible goal. My not so sensible head would like to finish two books.

I just downloaded Killing Commandatore by Haruki Murakami on audiobook first thing. I’ve already started listening as I prefer to start the readathon as soon as I’m up. It’s so good so far. I think Murakami (particularly on audiobook) is almost a readathon tradition for me, he’s certainly featured a lot over the years.

Update 14:44 I’ve read the first 250 ish pages of The Queen of Wishful Thinking by Milly Johnson. It’s a fun book which I’m enjoying more than I expected. I used to love her books but then a few years ago I really went off of them after one had a ridiculous plot twist involving a disabled character. I’m glad this one is back on form.

I also listened to a few more minutes of Killing Commandatore. I’ve listened for about 45 minutes since 9 this morning.

Random Bullet Points of Life

For the little things that need recording

  • At the moment I am starting a lot of crochet but not finishing much of it!
  • This week I am going to try to start using my manual chair in the house again.
  • My care package has been in place for so long now that I have little “remember when…” anecdotes which a couple of the carers.
  • I am pleased with the writing I’ve been working on lately but am in need of a new project and have multiple vague ideas.
  • Yesterday was Henry’s birthday. I enjoyed seeing him tear around at his party but just watching was exhausting.
  • Mum and I went to hobbycraft this week. Shockingly I didn’t buy yarn.
  • I went to a play called Re:Production this week. I only went because I could get free tickets (and got them on the day) but it was pretty good. It was a nice, enjoyable, spur of the moment treat.

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.

An update on Blogtober

My attempts to do Blogtober, were I said, going to be kill or cure for this blog that I keep almost abandoning, then trying to resurrect only to practically abandon it again. And actually they are going pretty well.

I have several ideas for blogs but sometimes I don’t have time to write them. That’s the problem today. There’s been a few tiny niggles. Insignificant in the grand scheme of things but time consuming and a little bit mentally draining.

And as much as I planned to write a post about Frida Kahlo and disability, another one about disabled characters in books and possible one with some writing thoughts, my main thought when it came to blogging tonight was “oh god, I need to write a blog.”

So that’s how Blogtober is going. I’m glad to be blogging again and I’m mostly enjoying it. But today I’m not. And that’s ok.

The Future Starts Here

One of the exhibitions we went round at the V&A on Monday was The Future Starts Here – 100 projects shaping the world of tomorrow. Going to that was a spur of the moment decision but definitely a good one.

Some of the things featured where everyday type products – iPhone’s and smart devices (Amazon Echo/Alexa, specifically). Some were products and projects I’d heard of like driverless cars and cryogenics (referred to as “life extension”) – I couldn’t decide if the emergency kit and instructions for what to do when someone who has chosen cryogenics dies were scary creepy or interesting.

Others were things I had heard of used in different ways – crowdfunding had been used to build a bridge and that was featured. And there were things I wouldn’t have thought of.

The whole exhibition was very thought provoking, well laid out (much easier to get round than the Frida Kahlo one) and I was pleased we had chosen to add it to our day. I’ve been collecting pictures and ideas for writing prompts recently and found several interesting ones to add in there. I think my writing might be going to take a very sci-fi twist if I use them.

At the end there was a collection of letters and a sign reading “The future is” with a stage underneath. Instructions encouraged you to use the letters to spell out what the exhibition made you think the future would be. Take a picture to share online.

So I did (or rather my friend organised the letters for me). I couldn’t get my wheelchair on the stage. So there was only one choice of word

Emma in her powerchair wearing a pink top with her hair in plaits. She’s sitting in front of a bright pink stage that has a step to get on it. A sign above reads “the future is” and Emma’s friend arranged letters on the stage to read “inaccessible”
The future is inaccessible

A Trip to Paddington

Last week I wrote about how place are Allegedly Accessible but so often aren’t. About ending up with memories of events that aren’t of the good time I had and the things we laughed about but of things being unexpectedly inaccessible and the pain and struggle that causes.

I went to London on Monday. I’m worried that it’s going to be another thing that in years to come my memories are of someone lying to my face and the fear and panic that caused, rather than the fun that came before. I’m angry about what happened. I’m very sad about how my brilliant day ended and being left with those memories to cloud the fun ones.

I’ve been trying to write about what happened but it turns out I said it all when I ranted on Facebook yesterday. So I will just copy and paste that and add a couple of bits in

My friend Carrie and I went to the V&A on Monday. We got the train to Paddington. I’m really not confident in that area of London (I go into Waterloo usually) and hadn’t felt I could do it by myself. But as we walked back to Paddington I thought I could do this by myself. I even thought I might try going via Oxford to London Marylebone which is an area I don’t know at all.

Then the assisted travel guy wouldn’t listen to me when I said I thought it was better for me to go in the other wheelchair space and he and a colleague we also asked both lied when we tried to insist and said it was the only wheelchair space. Then there was announcement that coaches 9-12 would detatch at Reading. But I was already on the train. In what was announced as the train pulled out as coach 11. Panic.

Twitter to the rescue and a man with a ramp came at Reading, took me off the train walked me past the second wheelchair space in coach 7 to the one in coach 3. Because he was happy to put me at the front like I wanted. Telling me as he did so that Paddington do this all the time. He also said “they don’t care because once you’re on the train you’re someone else’s problem”.

And one of the guys I’ve known for years met me at Didcot, commenting about Paddington and telling me that they’d got a message to Reading as soon as Paddington confirmed where I was.

I always thank the assisted travel team but I made sure to tell the final one how much I appreciate how good they are at Didcot and how I always feel safe when I know it’s him (when the staff put me on the train they often tell me who will be around when I return).

I wish I could say the same about Paddington. I don’t know if I will go there again or not.

[NOTE: I will be complaining and am sending details of my experience on Monday to at least one professional who is collecting assisted travel experiences.]

We Are Disabled #blogtober

I love twitter. I don’t do as much with it as I used to as my boundaries have changed (as they have with a lot of online stuff – I am missing the times when the internet community was smaller and people knew you but they only knew an online, anonymous you). But I still love it.

One thing I enjoy about twitter is RoCur – rotation curation – accounts. Those are the ones where a different person tweets every week or even everyday. There are different ones for people from certain places, who work in particular jobs or who have certain interests. They give a snapshot of people’s lives and experiences.

I’ve done People of UK three times and the now defunct Oxford Is Yours once. The @NHS rocur account is another I find really interesting to read. I’ve long thought that there should be a disability RoCur so I was pleased to discover We Are Disabled a few months ago.

I got access to the account this morning and will be hosting it until next Monday evening. I see it as a useful tool and a potentially fun thing – I’m enjoying it so far. I don’t see it as an awareness raising opportunity in the traditional sense but it’s possibly helpful to help others show a disabled reality.

And luckily or unluckily (depending on which part and how you see it) yesterday’s trip to London gave me both good and bad disability things to tweet about when I get a spare minute.

The Things I Can’t Do

Someone declared a few months ago that there “must be lots of things I want to do but can’t.” They mentioned someone they knew was ill (I believe – had been hospitalised anyway) and was finding they couldn’t do stuff. I think they may have been venting frustrations. I said no, I didn’t know how that felt because I can do everything I want to do.

From her reaction, I don’t think she believed me and I ended up back tracking and justifying that statement by pointing out that I’m lifelong disabled so I’ve never known any different (I am annoyed with myself that I allowed her to make me feel I had to do that).

She is right that there are things I’d like to do but can’t

  • I can’t do everything I want to do in London this week as they are too far apart to fit in.
  • I can’t see most of my friends as often as I want as they are too far away
  • I can’t go to the gym more than once a week as the best session for me is only on once a week
  • I can’t write all the stories and other things I want to as I don’t have the time.
  • I can’t stop buying books and yarn despite all the unread and used items in my flat.

But she’s also wrong. Because everyone, disabled or otherwise, has things they want to do but can’t. And the things I currently can’t do are due to life and circumstances. Not due to having Cerebral Palsy or being a wheelchair user.

Self Care Sunday

Self Care Sunday has been an occasional series on my blog for a few years. I think this is the first time I’ve resurrected it this year. It’s a way to stop and recognise how I’ve been taking care of myself that week. Both the big fun things but also the little, boring but important ones that make up the big picture. I can struggle with seeing that big picture.

This week I’ve been tired and I was in bed earlier every night Sunday – Thursday. I was late home on Friday and needed some wind down time before bed. I’ve been wanting to get to bed earlier for ages so it’s a start.

I’ve also managed to implement a routine for when I do a physio task with carer support (basically just them being there for moral support) for the second week running and fitted it in an extra time.

And I’ve been keeping up with my blogging, working on my crochet and made time to read. It’s nice to work on my hobbies, not just waste time on the internet.

All in all, not the most exciting week or the best at taking care of myself (I definitely need some healthier meals and more water). But a pretty good one, all the same.

Chubster

Last night Mum and I went to see Hal Cruttenden in his new show, Chubster. Apparently he asked his teenage daughters to name his show and that was what they choose.

Hal himself was pretty good, loved his show. It’s the second time we’ve seen him and if he came back here in a year or two we’d probably go again. It was fun and went on for longer than it should have because he was clearly enjoying himself. Plus, seeing him dance to Let It Go from Frozen when he came on was hilarious.

He had a warm up act whose name I’ve forgotten (and googling isn’t finding). He was patchy. Some of his jokes were ok, a few were funny and several were rubbish. I’d say we wouldn’t go to him again but due to not knowing his name that might be tricky. I think we’re getting to the point that our hearts sink a little when we see there will be a previously unannounced warm up act. But this guy was better than the idiot who warmed up for Katherine Ryan a few years ago (whose name I have also forgotten). And it was definitely worth sitting through him to see Hal.