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.]

The same bad service

We have a new extension to the shopping centre here. It opened a few months ago and it’s disappointing. It’s rather empty and most of the shops that were talked about haven’t come. But a week or two ago the much hyped Nandos finally opened.

I don’t get the big deal about Nandos but admittedly I’ve only been once or twice and that was years ago. My route to and from CAB takes me past it so I’d been occasionally noticing progress and looking forward to seeing if it’s worth the hype.

Then it began to look more and more like they’d taken their perfectly accessible new building and made it completely impossible to get a wheelchair in there. It’s built into the side of a hill and they’d levelled off the outside and put steps up to it. Or you could go up the hill slightly then turn back to where it was level. Until they set up an outside seating area that filled almost all of that and a tree blocked the small part that was left.

I was furious. Mum was talking about going down on opening day with the press. And a lot of other people had noticed – a friend had spotted it a day or two before I did and complained. When I posted about it on twitter their corporate social media team said all restaurants would be accessible “if possible”. Then when I pushed them and a lot of other people commented how inaccessible it appeared, they said they’d pass it on.

A message to the Nandos Didcot facebook page got the response that the layout was temporary and it would be accessible, it had always been going to change. I don’t really believe them. Experience suggests otherwise.

When I was talking about this with someone they asked if I would actually go. I said probably. Some friends and I go out to eat once every few months and before this came up we’d talked a few times about trying Nandos. But that it wasn’t about going there, it was about having the option to go or not as I choose, the same as everyone else. Rather than having that choice taken away from me by someone’s having forgotten about those of us who come with wheels when making design choices.

Fast forward a month or so and it’s been open about two weeks. We tried to go on Saturday and got turned away. They’d refused to take a booking and when we got there said it would be a 30 minute wait for a table even though there were loads free. They turned several other parties away when we were in there. Not enough staff apparently. The reasons and how long it would be was all a bit vague so we gave up and went to Prezzo. I’ve since heard a friend has been turned away 3 times.

It’s almost a perfect example of equality because it’s bad service and it puts me off going back. But as much as I’d rather good service, all I ever want is equal treatment. And that’s what I got this time – the same, equal, bad service as else.

So Take Me As I Am

(title is a lyric from the Meredith Brooks song Bitch)

A couple of weeks ago I was asked how I’d enjoyed a show I went to by a member of staff there who I know. I had enjoyed it but there had been one thing that had happened – which was tangentally access related – that had really irritated me.  It was totally inconsequential and unlikely to be repeated but it had had an impact on my enjoyment and they asked so… I said “If I could just make one slightly bitchy point….”

More recently than that I discovered that the actions of someone else have left me with a huge mess to sort out. I feel more than a little screwed over and beyond frustrated as I did everything I was supposed to do but the person who was supposed to do the next part didn’t and because they didn’t do it at the correct time they now can’t.  And I’m the one who will lose out if it’s not done so I need to do it.  Their failure makes me look bad.

I was ranting to a good friend about that and I said “I know that this is really bitchy but I hope X happens because of this”

She stopped me and said “that’s not bitchy at all.” and made some other comments about thinking I’m acting like a bitch when I’m not.

I say stuff like that all the time when I complain or raise issues.  Phrases like “I don’t mean to be a bitch but…” cross my lips all too frequently.  And really they shouldn’t.

Complaining or raising issues in a constructive or fair way is nothing to be ashamed of. It’s only right and I’m sure that if able-bodied people had to deal with half the crap I have to they wouldn’t be half as calm and dismissive of it as I can be.  Recently a few things have happened which have made me realise just how abnormal my version or normal really is.

A third issue – one of disabled toilet accessibility – reared it’s ugly head. I really thought all the able-bodied people around me were blowing it out of proportion.  It was just one of those things. It happens and it’s irritating as hell and it really shouldn’t but what can you do?!  There were a couple of ways I could work around it and I’d almost never go there again anyway as I was unlikely to have a reason to.  I knew I should complain about the issue and have something done but it happens a lot of places and I was in the middle of dealing with the second incident I mentioned above and just didn’t have it in me to do anything about it.

When one of the people running the event (not the venue) asked me about it I did tell her about it. I told her it both was and wasn’t an issue and had to stop myself talking it down. I don’t think I did a good job of that. And one of the things I told her about was how I worry that people will think I’m alway moaning or never happy.  That I’ve heard those phrases along with “ungrateful” and “argumentative” many times and “you have to understand we’re doing our best” and “we don’t really get many wheelchair users” are among the stock excuses.  It grinds you down.  I wonder, sometimes, if part of the way I so often almost apologise for my complaints or put myself down by phrase it as “being a bitch but” is because subconsciously I think that’s the only way I’ll be taken seriously.  I think the person I was talking to go it and she reassured me they don’t think that about me.


Later in the session another member of staff wanted to ask me about it. Fine. They wanted to know – was there actually a problem or was the problem that I have a new wheelchair and I’m not used to it yet?  I took her and showed her how it wasn’t big enough for my chair and she got it. But talk about proving my point!

I wish that was my only example of that sort of thing from recently.

It’s not – last Sunday a well known pizza chain refused to serve me because they had a booking for a short time later that they’d chosen to book all of their (small) downstairs for and they had no lift. They had no desire to come up with a solution (I could see from how they had it laid out that a small rejig could have fitted a table for me and my friend in too) and didn’t even apologise. It was clear that they considered I had the problem not them.  And a request I made early this week to another organisation for an explanation why something had happened resulted in my receiving an email Friday that didn’t explain it and basically suggested I should put up and shut up. Again, I was the one with the problem not them.

My friend above who made the comments about thinking I’m being a bitch when I’m not is right, I should stop doing that.  But it’s a bloody hard habit to break when society is desperate not to take me as I am but to blame me for it instead.

The need to be grateful

I went shopping in a brand new craft shop last week.  It had one of those lifts where just the platform moves and you have to hold the button down the whole time.  It was also one where you have to open the door yourself. And on the ground floor it had a ramp up to it.  I got another customer to open the door for me so I could go in it and then backed my chair into the door so I could open it at the top

And when I came down I grabbed a member of staff and asked for help.  She offered to come down in it with me which I took her up on.  She asked what I’d found and if I do a lot of crafts.  Commented how stupid needing to open the door to the lift was. General small talk, kinda jokey and just nice.

When I made it to the check out the same staff member was there and joked “fancy seeing you here” I replied “yeah such a surprise” and she told her colleague that we’d bonded in the lift.  That staff member went off while I was paying and commenting that “she’ll hate me for doing this, they get put up in the staff room” her colleague jotted down that person’s name on one of their feedback slips which tells you how to go online and give feedback.

I didn’t know what to make of that. I’m pretty sure a big part of this is one of those “my issue” things but it still made me a bit unsure.

Because it is very nice to find help that’s needed in a shop quickly and easily.  And more so when the person is happy to do so and makes it obvious without being over the top.

But at the same time it was just help with the lift.  It wasn’t anything above and beyond really.  If you think about it in terms of the now defunct Disability Discrimination Act it’s a reasonable adjustment and no big deal (I have no idea really how the replacement Equality Act deals with these).

I believe in complaining – and I believe in acknowledging good service although I know this is something I could do with doing more.  By giving me the slip with the staff members name though I felt like it was being made out to be something unusual that they didn’t have to do and that I needed to be grateful for. As though that second worker, the one at the checkout wouldn’t have done what the first one did and was surprised by it.

Whilst I’m sure that wasn’t what they meant I didn’t like it.  I thanked the staff member who helped me and the one who gave me the card. I always do.  But helping people is a part of their job. It’s not an act of charity designed to make the staff feel good.

The card with her name is still in my bag. She gave me good service and I think I’ll send it off (not least because it enters you in a prize draw).  But I hope next time I go there I don’t encounter the “bonus points” attitude.  Even if it wasn’t intended.

>Disaster Strikes!

>I love my Kindle.  Absolutely love it.  But then I’m a huge bookworm and a bit of a techy gadget loving girl so it was an obvious step for me.  I still absolutely love real books as well and by them often but I use my Kindle a lot.

Yesterday I sat outside for just under an hour.  I started reading a new book on it.  To My Best Friends by Sam Baker.  Based on it’s subject matter (it’s fiction and is the story of the friends left behind after one of them dies having made certain bequests to the others) I’d been worried it would be a little sad so hadn’t started it before bed the day before when I’d been feeling depressed.  Having read and enjoyed another of Sam Baker’s books (The Stepmother’s Support Group) I should have realised it wouldn’t be – it’s not sad or depressing at all.  It’s really good and I got into it and enjoyed it sat there in the sun. Eventually I had to go in and have some dinner and get on with my evening.

Just before bed I picked up my Kindle and thought I’d read a bit more before going to sleep.  I was quite looking forward to it – I’d put it down earlier out of necessity and wouldn’t have done so if I could have avoided it.  This was going to be an enjoyable read to wind down before sleep.

Disaster struck.

I dropped my Kindle.

Heart in my mouth I wheeled over and carefully picked it up.  With a very tight grip on it I checked it over slowly and thoroughly.

Nothing had come off

Nothing had come loose

It had no visible damage

The screen saver was still showing Emily Dickinson just as it had when I’d come in from the garden earlier.

Huge sigh of relief.  Things were going to be OK.  It was absolutely perfect, you’d never even know I’d dropped it.  Wheeled back over to my comfy spot full of resolutions to be more careful next time.  Settled myself down, the adrenaline of disaster averted dying down as thoughts of reading occupied my mind once more.  All was well and happy once again I slid and released the on switch as I’d done thousands of times before.


It wouldn’t turn on.

Panic set in and the thoughts of going to bed, let alone reading before bed, disappeared.

I’d broken my much loved Kindle – which was very expensive and my treat, a combination of the saving up I’d done for it and for achieving a long held goal which had meant I’d been able to buy it sooner than I would otherwise have been able to.  And this was accidental damage.  Which warranties don’t cover.

Googled the problem.  Forcing a reset by holding the power switch for half a minute before releasing didn’t work.  I tried it repeatedly though, hoping each time.  Pushed all the casing together more just in case it had come loose and I’d not noticed.  No luck.  Put it on charge for a bit even though the battery had been pretty well charged.  Still nothing.

Tweeted my woeful tale of disaster and a broken Kindle.

Lots of tweets in response.  Supportive, but mostly of the “thank God it’s yours and not mine” variety although no one actually came out and said that.  One tale of how they’d broken their Kindle and had it replaced for free.

Left it over night having had a very late one as a result.

Tried to force a restart again repeatedly but it still wasn’t working.  Called the Kindle helpline listing to very jaunty hold music.  She got me to try various things.  I’d tried all but one.  In the end she got me to plug it into the USB on my computer and leave it for an hour when she’d call back.

At that point I’d realised that when I’d said “I dropped it no more than a metre” (she asked)  the assistant had replied “is that about a foot and a half?” and without thinking I’d said yes.  I was distracted, that’s my excuse… I do know that a meter is more like 3 foot!

Phone goes, Amazon calling back.  After talking me through various things to try the assistant transfers me to the “specialist team”.

My heart sank.  This was going to be very expensive.  And I’m broke at the moment.

The first thing the specialist said?

“your Kindle will have to be replaced.”

oh shit I thought

“Which we’ll do for free.”

“sorry, how much will that cost?”

“it’s free.”

“thank you very much.”

Relieved.  this was working out ok after all.

“You’ll need to return the broken one.”

“Yeah I can do that.”

“Just confirm your e-mail address for me, we’ll get DHL to come out to collect it and I’ll need to send you details”

“how much will that cost?”

“it’s also free.”

Seriously so relieved.  I must have thanked her about six times in total.  I bet she hears that a lot though!  I wouldn’t have expected that to be covered in full – no one covers accidental damage in full on their warranty.

I had an e-mail about an hour ago.  My new Kindle has shipped.  It’ll be here Saturday.

I’ve ordered a silicon skin for it.

And my tale of woe and disaster had a happy ending after all.

Seriously impressed with Amazon’s customer service – that’s going above and beyond!

>Cinema Fail

>A friend and I attempted to go and see Disney’s A Christmas Carol this afternoon. I say attempted because it turned out to be the 3d version.

She has unnamed neurological issues and didn’t even make it through the titles before she had to leave because it was doing a number on her vision. I forced myself to try to watch it but gave up eventually and left because I felt incredibly sick. I still feel kind of rough now and I know that my friend had to go to bed because she felt bad.
I let the matter go when I left the cinema (although their customer service had already proven to be bad) and am debating if I’m going to let it go or write a letter. But my friend spoke to a staff member and asked for a refund (which was refused) – she had said in passing when we went in that she had a neuro issue and then when she complained was told that a lot of people with neuro issues have problems with the 3d films.
And googling provided me with a page that said people with a lazy eye (which I have as well as my CP) and other visual problems can have issues with them.
If a company knows that people with neuro issues may have an issue with their 3d films why haven’t they got signs up listing that?!?! My mum said that maybe they think you’ll know that already. But 1) We had wondered about my friend (but not for me although I’m thinking it’s probably not the CP/neuro side of things which made me nauseaous it just gave me nausea as my mum has a similar issue with 3d films she says and she’s Neurotypical) but didn’t know or have any indication of known links and 2) surely in a day and age where a packet of microwavable pasta sauce has to have a warning that it may be hot when microwaved, the cinema must be required to have a sign – a sort of “informed consent” thing?
Also why do they only have 3d showings and 1 or 2 2d ones?! The listings outside the cinema made no mention of it being a 3d one although I see on the website the 3d showings and 2d showings are listed separately.
Seriously not impressed.