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!

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*)


I feel like this should have a much catchier title but I don’t know what it is!

I’ve been thinking a lot over the last few months about travel.  About whether I could swing a proper trip next year, financially, practically and most importantly all of the disability related aspects that go into it.  And I’ve been considering the disability aspects of it even more over the last few weeks. I’ve had a night or two away in this country over the last few years but I’ve not had a proper holiday since 2007

I have two options in mind – a dream trip and a more realistic trip, closer to home to visit a friend. For both trips I’d be travelling by myself which isn’t a problem because I’ve done that before on a plane. But recent events have made me think a bit about this and left me unsettled.

First there was an incident where my good friend Sarah flew. And the airline destroyed her powerchair.  Thankfully that was on the homeward part of her journey so it didn’t ruin her holiday – and she’s been able to get the airline to cover the cost of a replacement chair. But it’s a pretty heart stopping thought. What the hell do you do if you get to your destination and your wheelchair, your only form of mobility isn’t there or is destroyed?

My mum reminded me when I told her about Sarah’s wheelchair about an incident when I was a teen when we watched as the airport staff dropped my manual chair off an ambulift. Luckily it bounced. Given that’s level with a plane door and how high planes are I’m surprised.

And another friend posted a story on facebook about having so many problems with a language barrier she’d been convinced her chair wouldn’t be there when her flight landed. It was, but again what do you do if it isn’t? I don’t see a language barrier as an issue on either of my hoped for trips but… it was definitely a moment of “oh no do I need to worry about that as well?!”

I’ve come to the conclusion that any travel for me would need to involve either taking both my manual and powerchairs. Which is doable once I’m there but whilst getting to/from/around airports with luggage and one chair seems easy to plan, throwing in a second chair brings more logistics to solve. Or I take the manual and hire a powerchair wherever I’m going and hope it works out.

But then there’s the hotel issue.

Mum and I went to London a couple of weeks ago. We stayed in a particularly well known chain of budget hotels which has a reputation for being one of the best for disability access and advertises with a famous comedian.  I’d for some reason got it in my head that this was a relatively new hotel (true) and that it only had adapted rooms with wheel in showers (false). Then I saw an access review on DisabledGo for that particular branch and some rooms were adapted with baths.

So a few days before we went I called them and asked please could they make sure I got a room with a shower and could we have it as a twin.  The person I spoke to told me she “thought” they only had showers in their adapted rooms so not to worry. I told her that wasn’t what the internet said so please make a note anyway.

When we checked in the person at reception commented about my having phoned and that she was the one I’d spoken to. I found her patronising.

The room we went to was an adapted room. Made up as a double. And with a bath.

I’d tell you I was shocked or even surprised by that but I wasn’t. I would have been surprised if they’d given me what I wanted first time (pleasantly so).

Back to reception. Mum’s walking next to me going “don’t get angry”

Someone else was on reception. I explained and he found us another room. I don’t think he understood why it was a problem though. We had to wait while they made it up and they got us a free drink while we waited.

It helped and we got the room we needed and we had a good stay.

But I was still pissed off.  Because what is the fucking point of my booking an accessible room and going to the trouble of ringing them to explain my needs if I’m going to get fobbed off because the staff member thinks she knows better and my requests ignored?! And I was thinking of other stays in that particular chain over the last six or so years.

One of them I went straight into a room that met my needs and it was probably the most accessible room I’ve ever seen in a hotel room (and I’ve stayed in some hotels that specialise in disability). One of them like this one where the room I got didn’t meet my needs but I was moved to one that did. And one they didn’t have a room that could meet my needs so I was stuck.

So a complaint went in to their head office when I got home. And the manager of that hotel called me.  I was very pleased with his response and I hope changes will be made to prevent stuff like that again – some based on my suggestions and some based on things he brought up. But that’s just his particular branch. I’ve had the cost of our stay refunded too.

But then the fact I’m planning to stay in another of their hotels later in the year came up. It’s a lovely place he tells me, new, only just opened a week or so before and he’d stayed there himself. If I want he’ll call them and explain the situation and sort it for me so I don’t have a repeat. So I say “yes, please.” and ask him to email me to confirm.

I’m really happy because I feel listened to, problem sorted, bonus money back (I didn’t expect that as we actually stayed and did so in a room that met my needs) and I feel I’ve made a difference. Life is good.

Ten minutes later his email hits my inbox and the crash of access woes back into my life and brings my mood down. Life is not good.

This brand new literally at that point open less than a fortnight hotel didn’t at that time have any accessible rooms that would meet my needs – i.e. with a wheel in shower – and they didn’t know if they would in time for my stay. I assume they must have had accessible rooms with a bath otherwise I want to know how the hell they were allowed to open.

It took a week for me to get a definitive answer.

During which time almost everyone was suggesting I cancel my stay and I was stressing because I’m going for a very specific that weekend only event. And I was trying to see if I could find somewhere else to stay if I did cancel. At which point I discovered that the other well known budget hotel chain (them of the “no sleep till bedtime” adverts)  was allowing me to search for accessible rooms in the location I needed and bringing up hotel rooms only to include part way down the details of the first three hotels the words “unfortunately this hotel has no wheelchair access.”

I’ve now been promised that this new hotel will have suitable rooms by the point I stay and they 100% guarantee I’ll get one.

But I’ll believe it when I get there. And in the meantime I’m wondering just how possible a longer trip abroad really is.

>”It’s my fault, I’m really sorry.”

>Someone made a pretty big mistake today. One that affected me pretty badly.

But then took the time to put there hands up to me and say “Emma, I’m really sorry.” and to admit to me that it was their fault. He looked me straight in the eye and went “I spoke to Julie and she told me she’d got you on the train but I just forgot to come help you off.” He told me he shouldn’t have forgotten and that it wasn’t good enough.

By the time I had been to Reading waiting for a train back and gotten to my sleepy little town he’d arranged for a wheelchair accessible taxi to meet me (no mean feat in my sleepy town where they are like gold dust) and it was there waiting. And he’d arranged for it to be paid for by the train company.

I live literally ten minutes walk from the station. I told him it was pointless, no need. But he was insistent that I took the taxi home. He stood there saying “it’s my fault” and variations on “sorry sorry sorry” as the driver clamped me down. And he told me that he wished he could do more to make it up to me.

I went “actually, you can. These things happen stop apologising and shut up!”

We laughed and off the taxi went.

I was an hour and a half or so late getting home. And I will complain about that. but more so about the fact that on that train type the “emergency call” buzzers are set in the ceiling and as a wheelchair user I can’t reach them when I need them.

I really, really, respect the fact that he had the nerve and the confidence to admit to me. To say that he forgot and that he’s sorry. And he meant it too.

I’ll tell the train company that.

And I’ll tell them about the train manager on the one I got stuck on. I never saw her until after I should have left the train. She got me sorted out and off of the train in Reading. And even though I was then with Gordon (who does journey care there and who I know well) and I was fine she insisted on waiting with me and traveling to my sleepy station with me to be sure I was ok. Her shift was over. I never got her name but hopefully if I tell them the train times etc they will know who it is.

Gordon waiting with me the entire time I was waiting to (they usually go and do other work). He told me it was great to see me but he wished he hadn’t. We laughed.

With both of them I insisted I was fine. She could leave me and as long as he came back so could Gordon. They refused and they stayed.

None of that makes what happened today okay.

But it goes a LONG way towards helping.

Particularly the person brave enough to own up to forgetting and to apologise. I’m annoyed but I also have huge respect for him and his honesty. I don’t think I could do that.


>I’m about to disappear off of the face of t’Internet for a few days.  I’m doing some mad crazy travelling around the country for three of the next five days, visiting friends and pretty much just coming home to sleep and shower.  And I think a break from this virtual world would be good for me.

My real plan is not to come online again until Tuesday but my slightly more realistic plan says not coming online again until Sunday (because that would allow me to tick go 72 hours without using the computer off of my 101 in 1001 list).

I think this is going to be fun, tiring, exciting, enjoyable, relaxing and crazy all at once!  I’m looking forward to it.

>Snapshots of a Holiday: Isley

>One of the Western Isles of Scotland is a small island called Isley. It is, I think, 10 miles across (but I’ve a pretty definite feeling that I’m making that up) and it’s got some beautiful scenery. It’s famous for it’s distillery I believe. And if you were part of the voyage crew on my trip it was famous for another reason.

It’s the home of Denis, one of the voyage crew who was in my watch. Denis is a wonderful laugh who comes out with brilliant one liners every so often, usually totally unexpectedly. He’s done some amazing and incredible things in his life and several people commented that they would have liked to have met him “before parkinsons” or when he was younger so they could have done those amazing things with him. I would have liked more time to talk with him because his stories were so interesting.

So, back to the story.

Denis lives on Isley in a little house right on the coast of the island. And we sailed through a small channel between Isley and it’s next door neighbour, Jura. Literally a very narrow channel and not something I’d have wanted to sail through in the dark.

Denis had said we would see his house as we sailed past Isley but I had assumed we would just see the island and the rough area of his house.

Well, there is a reason they say that when you assume you make an ass of you and me.

I was wrong. Totally wrong.

Let me set the scene… we were on watch on the bridge but Denis had been told he could just watch the scenery and didn’t need to join us as it was a special occasion. I was doing look out on the side of the ship that Isley was on and Paul was steering.

We were told that it would be 20 minutes or half an hour till we sailed near Denis’ house and Paul and I both shouted down to the others hanging around having coffee to go get Denis and when he turned up insisted he remain with his watch as our personal Isley tour guide.

The appointed minute came and Steve, the second mate called over the PA for “all hands on deck and over to the port side to wave to Mary, Denis’ wife”.

Literally the entire voyage crew were over on the port side of the ship waving. They blew the horn and gave Denis a flag to wave to them.

We could see his house. In detail. We saw his shed and a boat parked nearby. We could see his wife and two other relatives in the garden. We could see that they were waving.

Denis was sooo touched at that, he almost couldn’t believe it. And I don’t suppose that I was the only one to get a little choked up at how fun and how touching such a simple thing could be. He thanked everyone including the permanent crew several times. The captain was somewhat embarrassed by his thanks but it was well earned.

I think it’s safe to say that was one of the best moment of Denis’ holiday. And one of the most memorable of mine.


>I’ve just uploaded a load of my holiday photos onto Facebook. I filled an entire album on there and still have millions left over so I might put some more on tomorrow. A few even have captions if you click on them! Shocking!

The link is here if you want to see and should work even if you aren’t a Facebook member.

I’m going to read my book before bed but tomorrow I will work out why I couldn’t upload them to the gallery on this site. I really will.

Finally this is one of my favourite holiday pics and I just realised it didn’t make it onto Facebook.

>Snapshots of a Holiday: Passion on The Bridge

>I was in the Fwd Port watch this time around and my watch leader was a guy called Bill who is probably late 60’s or in his 70’s. He’s sailed something like 12 times since 2001 (with JST I mean) and has done 21,000 nautical miles. His goal is 25,000 which is the equivalent of once round the world. For comparison, I started a RYA log book with this journey and have sailed 450 nautical miles. A nautical mile is 1.1 miles over land. Something to do with the curvature of the Earth.

Bill’s a brilliant watch leader and a great guy. Always making sure that we were OK, that we knew what was happening, that we understood the whys and wherefores if at all possible. Once he figured out I wouldn’t admit to being cold unless asked for fear of missing out, checking if I was cold at least once an hour. I found him much easier to talk to and work with than my previous watch leader. Possibly that’s an age thing (my previous watch leader is younger than me and I do tend to find there is a big difference between most late teenagers and people around my age) but more than likely it’s experience.

He loves to sail and gets dead excited about choppy seas and rough weather, putting up the sails and catching the wind. It’s really fun and contagious when he gets excited. I can’t really describe it, it’s just something you have to see and can’t help smiling at and joining in. At times I found the trip very emotionally challenging and draining and Bill was able to give me a lot of support and encouragement without really needing to do much or make it obvious. A very good sign of a great watch leader.

One day the ship was really heeled over to one side – the water was lapping over the starboard portholes below deck every so often like a washing machine full of laundry. And it was decreed that no wheelies (wheelchair users) were to go on watch after midnight. That was for safety reasons.

Next morning at breakfast I’m working on a toast and bacon sarnie and Bill comes over to greet me with a hug, a how are you today and to tell me he missed me on watch the night before. A bit later we’re on deck and John the captain wanders over and asks me if I’d recovered from my rather spectacular seasickness. And someone ruffled my hair, put their arm around me and gave me a squeeze. Neither John or Bill would admit who it was but I have my suspicions.

That sort of set the tone for the rest of the trip. I got hugs from or gave hugs to various members of the voyage crew at different points but I don’t think many days went past when I didn’t get a hug from Bill.

On the Sunday we got to Oban about lunchtime so we could have a look around before we left the ship early on the Monday (I got the 08:13 train to Glasgow) and one of the voyage crew who had a son living in Oban left the ship then.

Sarah (my buddy) and I arrived back at the ship just as he was leaving and thankfully got to say goodbye and how great it had been sailing together and have a goodbye hug with him. Everyone was feeling a bit sad and sentimental at that time about the trip coming to an end and I was crying. Denis left and we got me up the gangplank onto the bridge.

It was a bit chilly and Bill and I had a hug for comfort. He then stayed behind me holding me to warm me up a bit. Steve the second mate of the ship just walks past us at that point in time looks at us and goes “ooooh passion on the bridge.” and my tears soon gave way to laughter once again.

And that just about sums it all up.

Tough times and sad times, affection, happiness and laughter. All in all a good time and one I’m glad I didn’t miss.