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.

A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Or

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

>What Access Is – And Isn’t #spartacusreport #disability #access

>A few situation I’ve encountered when it comes to “wheelchair access” and what I’d like to have said in return.

If you’ve got toilets on the ground floor but not a disabled toilet then don’t tell me you’ve got wheelchair access.

If you had wheelchair access you’d have a disabled loo. A toilet which has no grab rails and which you can get a wheelchair in but not if you want to shut the door is not a disabled loo. So kindly take a moment to stop a think and stop claiming you’ve got one.

Don’t tell me you’re really used to dealing with wheelchair users and then tell me you can’t do your usual programme with me because of my inability to stand unsupported. If you dealt with as many wheelies as you said my level of disability wouldn’t be a barrier and I’d be doing what everyone else does.

Your suggestion that I can travel via London Paddington and save time by taking the tube from there is helpful. As is your telling me that there’s partial access in the tube station and my journey is doable. Unfortunately the reason you couldn’t convince me is that there’s no wheelchair accessible way into the tube station there. Listening to me and letting me get a word in would have saved us both the argument.

I asked if you had accommodation that’s adapted. “We have ground floor rooms” isn’t an answer. Because adapted means a shower seat, grab rails and being able to get my chair right in the room.

I’m really grateful you’ve made an arrangement to adapt things for me. But the reason I said I couldn’t do that was because I can’t. So adding on “unless you want to try the unadapted way that is.” is pointless. I’m 30. I’ve lived with my disability my whole life. I know my abilities and limits. I don’t need to be told to try something.

Having one or two steps and a movable ramp makes me think you’ve thought things through. When I arrive and it turns out one or two is actually seven dotted around the place. And that the ramp is moveable but you won’t let my carers move it? I’m going to be pissed off. But not as pissed off as you’ll be when I fall out of my chair on one of the steps and cause a bit of a panic.