No, no but it’s not funny at the end of the day is it? It’s serious

A couple of weeks ago my TikTok for you page was full of videos using a sound where there’s a room full of laughter. And then someone says “no, no but it’s not funny at the end of the day is it? It’s serious.” I’ve been thinking about that a lot lately.

About ten days ago I had a bad experience with something disability related. The internet would have you believe that this bad experience is something that happens regularly. And I could easily believe that at least one disabled person in the UK will experience that everyday (I have no figures to back that up).

Personally I’ve experienced that before but not for many years. In the past I’ve ended up in a dangerous situation more than once because of it. I’ve had sobbing panic attacks before because of it. It’s only due to a quirk of when it happened that it ended up just being very stressful and worrying this time. That and the kindness of a couple of strangers.

I could write about what happened. I could tell you about the strangers running around trying to find help. The other people who were around who didn’t realise there was a problem. The joking comment one of the other staff made to the staff member who came to my rescue when it was all over.

But every single person I’ve told this story to has laughed. Apparently the way I tell it is funny.

And that’s infuriating. Because it was a stressful, upsetting and potentially dangerous situation. A situation I regularly have to risk finding myself in again.

I wasn’t worried…

Earlier today I booked a couple of goes of assisted travel via the app. I really like using the app. It’s not 100% what I hoped it would be but it’s much quicker than phoning and I never get different routes or trains pushed on me due to being faster like when I ring. You book, it gets sent to the train operator to approve and along the way you get at least three emails per booking.

I wandered off to a podiatry appt right after booking, didn’t think anything of my booking just figured I’d come home to a full inbox.

When I was out “Sandra from passenger assistance” left me a VM asking me to call about my booking. She didn’t say if she was from the app (which us called Passenger Assistance from Transreport) or the train company (who also have a passenger assistance team), give me a phone number or say which booking it relates to. I figured maybe they were confused because I booked two identical journeys for two different days next week. But I was also worried it meant there was an issue with tomorrow’s journey (which I booked a few days ago).

Then I was sat in my podiatry appointment worried that I might have to cancel either my lunch tomorrow or one of my other trips, one of which is for a covid booster. And the head of the podiatry service was sat in assessing the podiatrist. Who gave me a lot of advice on managing my lymphoedema which anyone who actually considered me as a person should have realised I’d never manage (and given that he asked if I have a carer who lives with me and I said my only care need is compression, that I have no help to do)

I got home and managed via twitter to find out that she had to be from GWR. Called them, listened to a recorded spiel about how much easier using the app is. Got more annoyed because I’d tried the damn app. The record message said “up to a 15 min wait” but it was hardly any wait. Did various security questions to confirm I am in fact, me.

Only for the man I spoke to to tell me she’d wanted to make sure I knew that the local stopper service I’m booked on is non-reservable but I’m NOT TO WORRY because there will be a wheelchair space, they’ll make sure I get to it and I WON’T BE ABANDONED unable to get to it.

Seriously?! I’ve been using assisted travel since I was a teenager, I travel at minimum once a month and the local trains are always non-reservable. I only ever use the local stoppers out of Didcot. I was like “is that it? I knew that.” The guy I spoke to said it’s a new policy and sounded as bemused as I felt.

Because I wasn’t actually worried about travelling until Sandra left me a really vague voicemail and managed to worry rather than reassure me!

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.]

Have Powerchair, Will Travel

I travel a lot by train.  It mostly works well.  There are systems in place to support disabled travellers and as someone who uses them often I know how they work and at my local station and the two I’m at most often I know a lot of the staff who do disability assistance.  Trains are easy.

Except when they’re not.

There’s a writing course in a couple of weeks. It’s an all day thing in a country hotel somewhere and someone I know is going. I’d sort of like to go too. I say sort of because I don’t get my hopes up about these things before I suss the accessibility. And this is a no.  Not least because the nearest train station is only manned part time.  Up until midafternoon.

It’s not the only event I’ve seen mentioned lately that I’ve wondered if I could go to and ruled out (although the other one is possibly doable – it just has somewhat overwhelming logistics.)

So when the possibility of going to a one day workshop  came up (not a writing one) I was tempted. Birmingham or London were the choices and I said I didn’t have a preference for which it would depend on various accessibility concerns.

To be honest I didn’t hold much hope. I knew getting to both London and Birmingham is doable but it’s what comes next that’s the problem.  So I suspected I’d have to decline.

I got the details of the venue in Birmingham today and thought the name seemed familiar.  Then I looked at the directions. It’s five, ten minutes wheel from New Street Station. And it’s somewhere that 10, 11 years ago I went to for a CAB training session (I can’t remember what it was on, maybe debt? I can remember that I read my precourse material on the train there and they’d used Star Trek: The Next Generation character names for their examples in the case study and spelled at least one wrong).

It’s accessible. It’s I know it’s accessible not someone has told me it’s accessible keep your fingers crossed it actually is accessible. I know where it is and how to get there and I won’t have to faff with taxis.

Of course it’s not a guarantee that I’ll get  to go there or that if I get there it all works out. Accessibiity doesn’t work like that.  But it is one of the reasons why I haven’t, quite yet, had all the optimism and willingness to try travel and going new places stamped out of me.

I’d have a lot more of it if the bookish and writing events I’d like to go to for fun were the ones that turned out like this though!

Have Powerchair, Will Travel (Part 3)

Part One and Part Two

A couple of weeks ago I went to London for the day and went to Buckingham Palace.  I went last year with my mum and you can go back within a year for free if you get your ticket validated.  They wouldn’t validate my mum’s ticket because it was a free carer one but they validated mine and promised another free carer ticket if I went back.  Mum didn’t want to go back but my friend Eleanor came instead.  I wouldn’t have gone back if it wasn’t free but was keen to because as well as getting to look around the Palace they have an exhibition that changes each year.  Last year it was on Royal Childhood which was great. This year it was on Preparing for State Visits which was also very interesting and I enjoyed but I liked Royal Childhood more. Simply because there was so much more and so much more variety to see in that.

I love going to London.  I love the long train journey and a chance to really get stuck into a book. I love the variety of things to go and do. And I love going on the tube.

There are trains from here which go direct to Paddington but I prefer not to go on those – I went on one in January for the first time in years when I went to Cirque du Soleil at the Albert Hall.  The trouble with going to Paddington is it hasn’t until recently had step-free tube access.  And it now claims it does but only to one line in one direction and frankly the details it shares about it (high step and large gap between train and platform) suggest it’s actually nothing like step-free. You could probably bunnyhop a manual chair up it but not a powerchair. Come to think of it, it’s probably considered step-free to platform not step-free to train but the step-free tube guide doesn’t have the colour coding for any station (stations/line with a wheelchair symbol on a blue background are step-free to train, those with a wheelchair symbol on a white background are step-free to platform)

So I get the train from here to Reading and then change onto the local stopper to London Waterloo.  It takes an hour and a half (sometimes slightly less) from Reading to Waterloo but given that it puts me right in the middle of London walking distance from several things and on an accessible tube line (Jubilee) it’s worth it.  Given that I’d have to take the stopper to Paddington due to the safety mechanism in my chair meaning I can’t get on the high speed trains at Didcot it’s not actually that much longer than going to Paddington.

Got off the train in London and had to laugh.  The guard on the train had come down to me when I was getting on the train, asked where I was going to and asked the assistance guy to put me in a different wheelchair space.  Waterloo aren’t good at assistance she says, if I’m in the front space I’m right by where she’s based on the train she can come and help me off quickly rather than hang around while they sort themselves out.  I agree with her that Waterloo tend to be a bit late with assistance and I’m likely this plan. So I’m sat on the train and the guard is stood next to me chatting and holding the onboard ramp up ready to stick it down. I won’t be hanging around, I’ll just be straight off the train all good. Then the train stops and right where it stops on the otherside of the door is a man waiting with a ramp. Honestly… you spend an hour and a half on the train then two ramps come at once 😉

I mooched around for a little while or so (popped briefly to one of my favourite London places that’s right by Waterloo but didn’t have time to do it justice. Probably shouldn’t have bothered but it’s free and they have a much nicer disabled loo than Waterloo does 😛 ) then got on the tube.  That was a quick couple of minutes hop from Waterloo to Green Park.  But the thing about Green Park is that it’s step free by means of a platform hump.  Meaning that I have to board the train at the right place. As noted by the big blue wheelchair symbol on the floor and the “board here for level access at Green Park” underneath it. I love being able to get on (the accessible parts of the tube) when I want without asking for help.  Of the tube and winding my way through the long tunnels and several lift to outside and in the park waiting for Eleanor.

We hung out in the park for a while and then walked across it to Buckingham Palace.  They are very good as a whole at wheelchair access there. I couldn’t access the gardens the normal way so I’ve never seen them but that was all. The first time we went they said there wasn’t access to them which had confused me because I’d thought from the website there was. This time they said there was but we’d have to be escorted and their priority was escorting people in and out the accessible entrance so it might be a wait. We declined.

Popped up to Fortnum and Mason for a look but didn’t buy anything and then Eleanor and I went our separate ways. Cue me forgetting that the platform hump is at the back of the train travelling away from Waterloo but at the front travelling towards Waterloo and getting very confused and having to let about four tubes go before I figured it out (luckily they are about once a minute at that time of day) and twigged that I’d gone the wrong way when I got out the lift. They don’t have the helpful board here for access signs at Green Park because they have the oh so obvious raised platform hump.

Got the train back to Reading and was met by a new assisted travel guy I’ve only met once or twice S.  One of my regulars walked past me as I was getting off the train and called hello.  Then I agreed with the person helping me that as I wanted to go to Starbucks  on the bridge for a bacon butty I’d meet him on the platform for my next train. I could see he was still there talking to someone when I had my sandwich but as we’d said we’d meet on the platform and there was a while yet I headed for the platform. I barely got past them before a third staff member (not one I knew) walked past me and shouted across to them why wasn’t someone helping me, they needed to come help me. S came back over to me at that point and we were discussing need for help vs perceived need for help as we headed to the platform.

Made it back to Didcot and had a quick chat with them there about the fact the lifts are being replaced and so will be shut for the next three months before coming home.

All in all a good day but I had hoped to have a bit more time for mooching in London post Buckingham Palace.

So comes to an end my Have Powerchair, Will Travel series for now.

(Except to note that I went back to Reading last week for the day and no one met me from the train. Luckily someone else getting off went and found a member of platform staff who claimed he hadn’t be told I was coming. Which has since been disproved because I asked the assisted travel guy who came to help me on the train later and he had just started but could see my outward journey booking on his list. *sigh*)

Random Bullet Points of Life

For the small things worth mentioning but probably not worth a blog entry of their own

+ The furosemide for my lymphoedema is working and my feet are improved. Still obviously swollen but less so and my trainers fit better (but are still out of shape). I’m pleased. Blood test tomorrow to check the meds haven’t messed up my kidneys (and at my request check my iron)

+ I got sailing for the first time in several weeks last night. I really didn’t think I would based on what they were saying in advance about the weather but I was bored so we went to see. Even when we got there I wasn’t sure but the wind dropped down and I got out for about 45 minutes. It was good. I took a couple of pics to do a “spotted at the sailing club” entry but when I looked back at them they weren’t great. I put them on my instagram though.

+ I’ve been trying to do more with instagram actually rather than just taking pics and doing nothing with them after I accidentally lost loads of pics a while ago – wiped what they were on thinking I’d backed them up to my PC then discovered no they weren’t. I’ve got several pics I love on there.

+ For the first time in ages I went looking for a new layout for this blog and found one I really love.

+ My sister’s hen do is this weekend. I’m looking forward to it.

+ Bake Off started again this evening. I liked it. Part of me would like to see about going to a filming of An Extra Slice again, especially as it’s now being filmed at Waterloo so I could take my powerchair. But I won’t because they were rubbish at access when I went (didn’t have wheelchair spaces as such, made my friend sit separate to me and kept asking me to transfer) and I mostly just want to see an episode before everyone else again.

You Know You’ve Got CP When…

…you get the sort of “reasonable adjustmemt”  or “making it easier for our disabled customers” type treatment you’d never have dreamed was possible or thought to ask for. So much so you’re almost scared to say yes to it.


I got to Reading yesterday and one of the assisted travel guys got me off the train from Didcot, walked with me across the station and got me on to the train to Waterloo.  The guard came over and asked where I was travelling to saying “don’t worry if they aren’t right there with the ramp at Waterloo, I’ll come and check on you.”

Then there was an automated announcement “can the guard contact the driver” and he did from a thing right by the wheelchair space I was in.  There was a problem with the track right outside Reading and we would be delayed.

This went on for a while and I was just waiting and texting the friend who I was meeting in London that I’d be a bit late and what have you.  The train that had gone out before mine came back and we kept waiting. It was getting on for half an hour late and I was hearing all the people complaining about how little time it was giving them to get to their final destinations and how they’d be late and just glad that I travel with a lot of spare time.

Then the guard came back over to me and said it looked like trains would get moving again soon but that the one I was on would likely be cancelled because it was nearly time for the one after. Before I even had a chance to say anything about sorting help to get me off the train and over on to the next one (on a different platform) he added that he was trying to make special arrangements for me.

Because the train was going to Waterloo even if it was cancelled. So he’d asked if he could escort me to Waterloo on that train no matter what to save messing with ramps and the like .  I was like “What?!” and he held a finger up and said “ssh!”

Eventually it was announced it was cancelled. And he came back to me and said I was going to Waterloo on that train regardless. I asked and he said he’d stay with me (I would have been too panicky to sit by myself) so I agreed.

He went off to clear the train and we started moving. I was worrying about that but he came back after a few minutes.  I read my book, he flicked through his paper and we chatted and joked a bit.  A few places it stopped or paused and you could see people at the station looking confused to see us on the “out of service” train. We considered waving but gave it a miss.

We got to Waterloo about ten minutes quicker than the stopping time and much sooner than the passenger train everyone else took which left after ours did.

And I had a great time in London.

The journey home however was really disappointing. It wasn’t the level of service I’d come to expect from South West Trains.  There were other passengers on it and it stopped at stations other than Waterloo and Reading.

Normal, Mundane and Boring

This is something I’ve been thinking I should blog for a few months but haven’t got round to. I was talking to someone about the internet and disability earlier and this was something I mentioned. So now I’m blogging it.

I think sometimes it’s very easy to blog about the things that make me angry or that annoy me or that happen out of the ordinary. Generally things I blog about are things that I’m passionate about and often times that passion comes across in blogging about negative things.  It’s easy to forget to blog about the other side of the story – the times when things go well or are positive. Usually because that’s just routine and isn’t really worth noting.

Back in November I went to London and I had an absolutely terrible journey home. There was an issue with part of the tube not running and my need for step free access making finding an alternative route difficult (this was in part due to a failure on my part as an advocate because I didn’t have the knowledge to push for what should have happened to happen). And then there were big problems with the regular trains due to overruning engineering works and again.  It was frankly a nightmare

Early last year I also had a bit of a nightmare journey. In part because I was using stations I’d not done before, in part because it was during the floods and in part because I was travelling with a couple of people I’d not done before. And their expections of what would happen, my expectations of what should happen and the reality of what did happen were all slightly different.

I then spoke a few months ago to someone who was with me for one of those journeys and told them about the other.  I know they read my blog so they may have read other stories of difficult trips. This led to their commenting that I “don’t have much luck” travelling on the train

And nothing could be further from the truth.

By my reckoning since the beginning of this year I’ve

Been to Reading once – and that train journey was fine.

Been to Birmingham once which involved changing trains at Oxford – and those journeys were unremarkable

Been to London Paddington once – apart from having to chase after the assisted travel staff member when he tore off from the customer reception to my platform faster than I could go it was fine. Terminal stations, particularly London ones have a reputation for making you wait for assistance but there was a man with a ramp ready and waiting when the train pulled in. I came back on an earlier train than I was booked on and asked my Dad to go to the station at this end to meet me. When he got there they said “We know she’s coming on the earlier train!”

And counting today I’ve been to Oxford at least four times. I did have to come back via Reading on one of them because of a broken lift. But it was easy and I got to chat to someone who works there I’ve known for years but hadn’t seen for ages.

That’s basically 17 trains. (7 return journeys, one of which involved a change and my extra diversion to Reading). 34 interactions with station staff who needed to be there with a ramp and help me. One that was a problem but which was quickly and easily resolved with little stress. And none of them were negative or bad or really worth remembering.

It can hardly be described as my having solely bad experiences with the trains.

But – and I suspect this is true of many things if I think about this – I don’t blog about the normal because it’s mundane and boring and not worth doing so.

I think perhaps I should.


I was on the platform at the station in Oxford this evening.  We’d been to see a show (Shrek the Musical) and it had been a bit of a break neck race to get there after the show finished about 20 minutes late meaning we had approx 18 minutes to get out of the theatre, over to the station and on the train. And there wasn’t going to be a train for an hour after the one I’d booked on.  Also I’d forgotten to check how late Didcot station is staffed tonight so I thought if I had to get the next one it’d be ok but I wasn’t sure.

It was a definite argh stress moment and a very quick walk for my friend who was keeping pace with me. But we got there with a couple of minutes to spare and immediately spotted a staff member

I went over to him and said “I’m going to need the ramp please. I’ve got assistance booked to go to Didcot.”

He said whatever he said in reply I can’t remember exactly but along the lines of OK. And I think he mentioned the time of the train. The he grabs his radio to call over to his colleague.  My friend and I were right next to him and could hear the conversation.

“can you come over to platform 1 and get a ramp please?”

“what do you want a ramp for?”

“For a wheelchair. Obviously.”

We were amused by that and the look on his face. Then conversation with his colleague over he put his radio down and looking at us went “What did he think I wanted it for? BMX tricks?”

A few minutes later a train pulled out of the station and our slightly delayed train pulled in.  The colleague appeared and a ramp was produced and put down bridging the gap between platform and train.

Sadly it wasn’t used for BMX tricks or anything exciting like that. Just to let this wheelchair user board her train home after a night out with a friend at a good but not great musical and a crazy rush to the station.  Which is probably exciting enough at just before 10pm on  a Friday night. And anyway ramps are for wheelchairs.


A Properly Poorly Powerchair

I’ve got a poorly powerchair. I’ve known for a fe weeks that it didn’t feel right but I couldn’t put together what was wrong with it.

Then mum and I went to Oxford to see The Mousetrap and on our way to the station afterwards (I had gone in early for drinks with a friend) she said the back of my chair struck her as wrong. When we got back to the station she had a properly look as we had time before the train and said she wasn’t sure. But I mentioned that I’d thought it felt off and had had a feeling it was something on the front right.

I’d been not saying anything to anyone because I wasn’t sure if I was right and anyway denial was a nice comfortable place to be and meant i didn’t have to do anything to sort it out. But she said I was right and that my front right wheel (my chair has six wheels) was coming on and off of the ground as I wheeled and actually I could see that in the reflection in a shop window.

So I emailed the guy who does my powerchair (at the moment I have two wheelchair technicians because my manual is NHS and they provide servicing for free. Consequently I see a lot more of the technician who deals with my manual). And I also mentioned that I definitely needed new tyres and suspected I was beginning to need new batteries. We spoke on the phone and he said he’d come out yesterday.

In the mean time I was using it as usual and trying not to worry about it. A few people had said to me since then it didn’t look right including a new staff member at Reading Station I’d never met before. I told him I knew and was working on it but in the mean time I preferred if we could pretend there wasn’t anything wrong. I’m not sure he got it but he tried to pat my shoulder in what I take to be sympathy. Let’s just say that I was whipping through the station quickly between trains and he was walking next to me and it wasn’t my shoulder he got…

The technician came mid morning yesterday and within about five minutes had spotted that it had a broken shock absorber, I asked if I could keep using it until they had the part and he paused at which point I added “bearing in mind I went all round Ascot in it on Saturday and round Oxford yesterday…”

Anyway, basically it’s not safe to use.

We chatted a bit more about the chair and he asked me if wanted the armpads replacing while he had if. I showed him a bit that I needed putting back after it had fallen off (the battery cover) twice in the middle of Oxford the day before and he went “are you trying to wreck it?” And well I had to admit that I wasn’t but it really does look that way.

Then after he asked me about book blogging having seen my email signature and I tried to explain, I’m not sure successfully, he left.

Taking my poor poorly powerchair with him.

And they’ve had some of their courtesy chairs stolen so they don’t have any available for me to borrow.

Several hours later he called me back. With what he described as “good news, bad news, and news”

When he got back to the workshop he found my chair has also got a cracked chassis and needs a whole new one. This, apparently, is not unheard of which I find very concerning. Especially as I’ve got a Quickie Salsa M and I’d always heard that Quickie and their parent company Sunrise Medical are one of the most popular/best brands out there.

This was the bad news, along with the fact that I’m not getting my chair back until next week at the earliest. The good news was it’s covered by the warranty (I’ve had the chair since Feb 2012). The news which was in between good and bad was the details how much my new tyres and batteries will cost. Let’s just say its £extortionate but cheap when you work out how long they last and how much taxis would cost (my dad is giving me a lift somewhere tonight. If I had t get a taxi it would be about £6 each way it’s not much more than a mile)

So I’m powerchair less at the moment which makes things interesting.

But it does mean my do NaNoWriMo in a low key way plan is out the window and I’m getting loads of writing done 🙂