Wednesday, July 17, 2013

2 wheelie women, 1 wheelie space #nogobritain

It used to be so easy writing a blog about living with disability - people do funny or silly stuff, write it up, other people read it and laugh or gasp at said silly stuff, job done. I was always careful, just in case someone recognised themselves in the pieces I wrote, and when I lost my anonymity I removed lots of old posts as it wasn't fair to have written about people who had no right of reply. So that's why, since the blog-worthy incident on Saturday I've been wondering how I can write it up honestly when some of that honesty is about people who may read this having behaved badly? It seems the only way is to be considerate but speak the truth.

It all went really smoothly initially - I know the Lime Street assistance staff and they know me, ensuring I'm on the train with no problems - just like any other journey to London. I'd booked my tickets early, reserved the wheelchair space and the seat opposite so I can transfer out of my uncomfortable scooter. I'd even, unusually for Virgin Journey Care received an email confirming that I'd booked that particular wheelchair space and seat. So, when a lady of about my age arrived on the train just moments before departure it was obvious something had gone wrong.

And it had, we'd both booked the same seats. Instead of informing the lady that the seats were already booked when she rang journey care someone simply left my reservation on the wheelchair space and added her PA's to the additional seats. That meant I was booked in, the PA's (her husband and an employed PA) were booked in but the lady using the powerchair was not.

The whole carriage was busy and two women using mobility equipment plus one set of rather pissed off carers meant we were attracting alot of attention. It was immediately obvious that the other lady had to have the wheelchair space - she was a powerchair user who couldn't transfer into another seat whereas I can. It was also obvious that if we didn't figure out a solution quickly between us all that the train would need to leave and we'd be put off the train. The train staff did their best to sort it out, as did I and the other wheelie using lady but the attitude of the people with her, whilst totally understandable was unacceptable and left me feeling really vulnerable and threatened. Had GG who usually puts me on the train been there, there would have been a full on fist fight given the attitude of the other carer's - neither GG nor the other lady's husband were the type of men to back down and neither of us would have managed to control protection fuelled testosterone fury. So, intimidating and upsetting though it was to be on my own, it was probably better that way.

The most infuriating part of the whole situation was that the other lady and I had immediately started to work out between us how we could share the available space - she had to have the wheelie space, there was no question, but fortunately as we were both very petite we could just about manage to re-arrange so that she had room to turn round, and we could squeeze in my scooter so that people could pass. The only reason we were able to do this was because it was a weekend and there were no catering trollies needing to get through - people could pass but on a weekday one of us would have been put off the train.

However, the lady's companions were having none of this 'we'll share' plan which the other lady seemed as ok with as I was. The people in the seats immediately behind offered to move, but the PA's were still cross and wanted to insist I was in their seats and had to move. The other lady had already seen the confirmation email I showed her and knew it was a genuine mistake but the other's acted like I was just one of those people who sit in a wheelchair space and refuse to move.

Things culminated when the PA said to me "I'm not being funny, but you can walk a bit and xxxx can't walk at all, so you have to move" Having exchanged horrified glances with the other wheelchair user I managed to calmly but firmly reply that I was on my own with no support and couldn't move further from the toilet, whilst they were two people to support the other wheelchair user and that it was not a competition as to who was more disabled, but that there was no reason the two of us couldn't share the wheelchair table and the PA's sit immediately behind us. I'd checked with the other lady that she did not have to have her PA's immediately next to her and she was quite happy to share the table with me with her PA's immediately behind me in her line of sight.

The train moved off and that settled things - she got the space, we got my scooter moved and for the rest of the journey she and I had a really nice chat while her companions continued to glower. It was stressful, upsetting and degrading for us both, but additionally for me, enormously intimidating. I understand the attitude of her companions, I've seen a similar attitude occasionally amongst some of my friends when access has failed and the general public are being deliberately unhelpful, but this was slightly different - I was a disabled woman on my own and of all people I sort of expect other disabled people and their staff to understand. The other disabled lady and I understood each other perfectly, but for some reason her companions thought it was acceptable to be aggressive and intimidating not just to a woman alone, but another disabled person.

Given the potential for the other people involved to read this blog post I can't take the easy route, call them wankers and be dismissive of their viewpoints. So, instead I'll just say to all PA's, carer's, family or friends of disabled people - please bear in mind the affect of your actions on other disabled people, not just the one you are with. We all understand the frustration, we all live with it, so that means that of all people we should treat each other with that compassion and understanding, not go off like a bottle of pop at the first hint of a problem!


8 comments:

Matthew Smith said...

Completely unacceptable behaviour from the other wheelchair user's husband and PA. If this had been another male wheelchair user who could transfer (we both know one), that could easily have led to them getting physically aggressive with him, regardless of his agreement with the lady, as they obviously weren't prepared to do with you. And it clearly wasn't your fault or the other lady's but Virgin's, who not only should have booked it properly but should really think about providing more than one wheelchair space per train -- it's not like a bus where the next one will be along in 5 minutes and will also have a wheelchair space.

I hope the lady gave her husband and carer a good talking-to once you were gone. Then again, I worry for her as they clearly weren't willing to respect an agreement between the two of you, both competent adults, which makes me wonder if she's in a position to reason with them.

DavidG said...

Ugh, nasty, and I can see myself not being too much help if faced with aggression, but hopefully I, and most people, would have had the sense not to initiate it in the first place! (OTOH it's not purely a male thing, I know a woman or two who would - and have - been as aggressive in my defence on occasion!)

I don't need to book the wheelchair space, so I've never had an incident with other disabled people, but I probably find people in my pre-booked seat about once every other trip, mostly they're fine about moving, or there's another seat that's as convenient for me, but sometimes you get people who will move, but are clearly reluctant - I guess that territorial possession is 9/10s of the law is buried just below the surface in most of us.

(On purely inadvertent aggression terms I must admit to once accidentally clouting the lady opposite on the temple with my crutch as I tried to put it up on the luggage rack. I couldn't have apologised more, but she wasn't best pleased)

Criquaer said...

Whilst not in any way condoning the carers' actions, I have some sympathy with them. They probably struggle on a quotidian basis to assist the lady. They probably were lulled into a false sense of security thinking the travel arrangements had been sorted. When these arrangements so obviously and publicly failed there were probably feelings of guilt and injured pride.

One of my carers has occasionally snapped angrily at others for their ignorance or treatment of myself. I always reproach him, as it is threatening especially to women.

Carers are as fallible as the rest of us however hard they try to be saints. It's a tough job. %)

Shirley said...

What a horrid, horrid situation to be in! You might not feel able to say it, but that bloke and PA sucked! If the other person didn't need one of them next to her, as she said, they had no business trying to intimidate you. Sometimes people can be so thoughtless and make life even harder than it needs be for us. I'm sorry that it happened.

JLT said...

Well done for working out an amicable solution with the other person! I have encountered situations where I'm happy to shuffle over to accomodate a second wheelchair user or even a baby in a buggy, but some Jobsworth tells the other person to get off the bus because I was there first (without asking me first). It strikes me as "Does He Take Sugar", others making decisions about my life, my space, without first consulting me.

Anthony Turtle said...

My wife was using a wheelchair as a post-op patient having had surgery on her spine, we were travelling to Spain to visit my elderly father. I booked space on the train for my wife and assistance. I got the wheelchair space and very little assistance from the station staff of Southern Rail.

Half way through our journey to the airport a woman in a non-foldable chair got on, saw my wife and was astonished. She said nothing of it and parked herself opposite where the cycles normally go.

When we were chatting about different things, I mentioned how helpful the train managers were, but I was surprised that they had allowed a double booking for wheelchairs. "Oh, I never book the chair space, there's not normally anyone using it, so I don't bother!"

Fribitt said...

This is such a depressing story. It sucks that the world is so poorly set up for anyone who is anything other than perfectly "able" that we have started to turn on each other!

The comment above that says careers and PAs have a hard job - I second that. I know how distressing it for my partner when I can't sit, or if I am somewhere she knows will cause me pain later. I think it's harder for her to watch me struggle that it is for me to go through it. I have tablets and sedatives to make it manageable. She has to constantly watch and be aware of it and of me.

Lets turn the frustration and anger towards the right people. The people who can make changes - not the ones suffering with us!!

James said...

I've found First ScotRail terribly sloppy about this sort of thing; even reserving a seat is no guarantee of getting one. I once found someone occupying my reserved seat - only to be told the ticket collector had told him to sit there and ignore the reservation! No reason, he'd just decided to overrule the system for his own whim.

Booking disabled assistance is a lottery too; last time my (disabled) grandfather booked it for changing trains at Edinburgh, it simply failed to show up. My brother's had even worse experiences changing planes with crutches, including being relegated to a back seat "so he won't get in the way in an emergency". I'm still surprised he got through that holiday without any airport staff being found with crutch-marks...

A shame they seem to have talked over/about the woman in question: you'd think in that rĂ´le they would know not to!