It couldn’t last, could it? Thant wonderful feeling I shared with so many on my Twitterstream last night as we were inspired by the Paralympics Opening Ceremony. A feeling that we can be more than we are, that we can be proud to stand up and shout that we want rights, not charity, that we can reach for the stars rather than look down at our feet. That we are Spasticus Autisticus, and we are proud.

I came down to earth with a bump today. I’m traveling to London to attend the Social Innovation Camp today, where I’m lucky enough to have been asked to come and speak as a panelist.

For people with disabilities, travel is difficult. Access is patchy, at best, and a small thing can throw travel arrangements into disarray.

My taxi came to pick me up from my home and bring me to the railway station. The taxi driver was going to be trouble, I could tell. First words out of his mouth were

“You want me to put that in the car? This isn’t a disabled taxi” (he was talking about my mobility scooter. It separates into parts and fits comfortably in even small boots.

I thought ‘no, I want you to tow it to the station’ (I think in sarcastic, sometimes) but I said “yes please, I’ll separate it and if you could please put the parts in the boot.”

He grumbled, but he did it, and we set off. The next thing he said was:

“Why don’t you drive that scooter to the railway station? Look, it’s easy, you can go on all these footpaths, no problem.”

I didn’t reply. The dropped kerbs on my route to town are irregular, and I have found myself scooting on the inner ring road before because I wasn’t able to get back up onto the footpath. Besides, my scooter doesn’t go very far without another charge, and I need to reserve my charge for my travel across London at the other end of the journey. Besides, dammit, why should I have to explain myself to the taxi driver? And why would he be so keen to not have the business, anyway? Rights, not charity, I thought to myself, and neglected to answer. I chose to ask him about the roads today instead.

“Big accident in town. Traffic backed up” he replied.

Great. I’m going to miss the train if I don’t get there in time. Quite apart from the requirement that I should be at any station from which I want to travel at least 20 minutes before the time of departure, and even then there’s no guarantee that the ramps will be in place. Sometimes, trains have just left me on the platform when I have been trying to get on. (Yes, I’m looking at you, Sheffield.)

I amused myself by noticing during the journey that a man was stood next to a completely impassable pavement, where work on the pipes beneath the surface meant there was no alternative for people but to walk on the road. Of course, there was no dropped kerb in sight. I wondered if he was from the Council and was going to address the issue with the service company. I found it funny in the context of being told by the taxi driver how accessible it was.

Sure enough, some kind of problem with the traffic flow meant we had to take a big detour, and I mentioned to the taxi driver that I was anxious about catching my train. He did his best to get me there, and miracles of miracles, we arrived with time to spare.

“How much do I owe you?” I asked. I could see the fare was £5.50. “And can I have a receipt, please? Would you make it up for £6, to include a tip, please?”

“Sorry love, the fare is £7.50. I charge extra for the scooter.”

“No, the fare is £5.50. I’m offering a tip to bring it up to £6. I’m not paying you £7.50 when the meter clearly says the fare is £5.50”

“Bloody Disabled” he said.

I was shocked.

“Today, I won’t charge the extra. But I won’t take you again. You should always go in a disabled taxi.”

“But I don’t need a disabled taxi. My scooter fits in your boot. What’s the difference if I have suitcases or if I have a scooter? Do you charge extra to transport suitcases?”

He got out of the car, and got the bits of the scooter out of the boot. He got back into the car to watch me put the pieces together. It’s not easy for me to do this, and it takes quite a bit of time, and makes me quite shaky and in more pain than I need to be.

I’m afraid I couldn’t resist saying “I hope you and the people you love never become disabled and have to cope with this sort of thing. Did you hear about that case in Bradford where the taxis have got into trouble for charging extra to people that are disabled?”

He said nothing.

I scooted to the platform. I missed the train by two minutes.

I was brimming with tears, the “Bloody Disabled” comment was ringing in my ears. This is how they think of me, those people who previously were so kind.

I always use the same taxi company. I’ve used them for ten years, exclusively. Most of the drivers have been kind to me, particularly when I was heavily pregnant and working and getting a taxi home a lot after being exhausted working on the wards. Clear as day, I remember the day I got the phone call that my Grandad had died. I left work, and cried all the way home in the taxi. The cabbie refused to take any money from me. I don’t forget that kindness easily.

My question is, how many times do I experience something like this before I change my cab firm allegiance, and they lose my (quite substantial) business?

p.s. Train station staff were great and I’m on the next train.

You’d think by now, I’d be used to it.

It’s now 21/2 years since I finally gave in and became a wheelchair user. So in that 21/2 years I’ve learned more than anyone should ever need to about public transport, about the jobsworth and the kindly strangers one finds at bus and train stations up and down the land. I’ve even braved the idea of Independant air travel, although only an internal flight to Scotland.

I’ve heard every excuse; the extra licences required by scooters to prove their various dimensions, safety provisions, gradient of travel restrictions etc. I’ve heard the nonsense about needing to have booked all access arrangements in the dawn before time in order to do an ordinary commute. I’ve faced sheer incredulous disbelief at the idea that I neither require nor desire to have assistance or an escort for every trip I take (even though I have no funding for such assistance).

I’ve also been initiated into the mysteries of disability on the rail network, the kindly old timer who disclosed to me how I should be getting a third off any full price rail tickets if I stayed in my wheelchair on the train. I’ve experienced the kindness of a fellow wheelchair user, who moved to the alternative disabled space so that I could board the train, when the staff were being less than helpful.

Today was always going to be difficult. Today, my plan was to travel with my two kids to Lanzarote, where my extended family are meeting in order to have some time together and hopefully some sunshine. Booking the tickets wasn’t very easy. Everyone else decided to fly with Ryanair, and they all booked tickets front heir nearest airports, namely East Midlands and Stanstead. When it became time for me to book my ticket, however, I kept getting stuck in a “computer says no” loop. I phoned the Ryanair customer service line, and they explained that the issue was that they were not set up to deal with a disabled adult travelling with minors, particularly an infant. I argued strongly  that these were my children, we were going on a family holiday, and I didn’t see why I couldn’t bl**dy well fly with my children like anyone else. Oh as usual, it was due to ‘elf and safety. Apparently, it didn’t even count if I flew with other members of my family (to help look after the kids), unless I actually bought them a ticket with my own.

So, I had to re-think the plan. I eventually found out that if I paid a whole lot more, so that I wasn’t flying with a low-cost airline, there were slightly different rules (and a bigger luggage allowance), so I decided to book with Thomas Cook. This meant I had to travel on different days to the rest of the family, and cut the holiday short from 14 days to 9. But it made it possible, so I went for it.

Before paying for the tickets (a whopping £850.00) I decided to do some market research, this is no small purchase and the possibility of it going wrong is quite terrible. So, I called the number listed on the website for assistance, and had a lovely conversation with the fella on the other end of the phone, who seemed to really understand my situation. I told him about the issue with Rynair, and he assured me that Thomas Cook just wasn’t like that, that there was no issue with me travelling with an oinfant and an under 16. I checked and double checked, yes, the booked assistance was now live and so there would be assistance for me at the airport. Yes, the kids would be sitting with me in the medical seats, one seat for a child and an infant on my knee. Yes, they were aware I would be travelling independently with the kids. This would be NO PROBLEM AT ALL.

Of course, I should have known better. I should have got a contract immediately drawn up to that effect, preferably using the blood of our respective firstborns. I certainly should have had duplicate and triplicate print outs of the written record of the conversation. But you know, I just thought it would work out? I just thought, as I hovered over the online “pay now” button, and checked with the passenger assistance advisor, who assured me the whole thing was now settled, I just thought it would work out, for once.

Yes, dear reader, I was spectacularly wrong. Again.

First sign all was not going according to plan was when upon arrival at the airport in Manchester, I went to the passenger assistance check in to be told “we don’t do kids, sorry”. I immediately countered with the usual stuff, this is normal, every day social barrier stuff that I have to go through. They insisted they could not offer me assistance, although backed off from the spectacularly discriminatory way they approached the situation. They went and talked to their boss, then returned, and took us all over to the check in desk.

This is where it began to get really surreal. The woman behind the check in desk didn’t know how to handle me at all. In fact, she didn’t even address me before calling for her supervisor. I watched the line of people checking  in, whilst bribing my children with crisps and apple juice, and being thankful for an endless stream of buses visible through the window (there’s nothing more interesting to my toddler than a “Big Bus”) so they were amused… At least for a while.

The supervisor came to explain very sweetly that unfortunately, the assistance company couldn’t offer me assistance, as I was travelling with children Independantly. She was very sorry to say that because of this, there was no way I could. Catch the flight.

What? Are you telling me that my tickets to flare invalid because I have children? Even though I’ve bought tickets for those children?

I’m afraid I was a little incredulous. How on earth do you justify this? I bought these tickets in good faith, in fact, I was on the phone to your assistance line when I bought them. I’m hardly likely to spend this kind of money without checking I can, in fact, fly with my kids.

Do you have a written record of the conversation? Did they give you an assistance booking number?

No, but when I spoke to them as I was buying the tickets online they assured me it was all sorted?

Do you have any proof of that?

No.

No, I somehow assumed that by calling the assistance line and checking whilst buying the tickets that I’d fulfilled my side of the bargain. I must have forgotten the inevitable rule that disabled people need to be double and triple more organised, and get written proof of every assistance conversation they have. More fool me. They claimed to have no record of the conversation, no assistance booked, no medical seats available, and that I would have to just go home. Even though I’d been dropped off at the airport with all the luggage and had no way of getting the kids and myself home without help.

You can imagine how the conversation went.

Essentially, they were worried about who would have responsibility for the children during the transport to the plane and during the flight. I countered that I was the responsible adult, and as their mother it was entirely appropriate for me to travel with my children. They emphasised that their regard for health and safety meant that the company that was out-sourced to do the passenger assistance was not prepared to offer assistance to me and my kids. And the decision about whether they would be allowed on the plane under my supervision would be one only the pilot of the plane could make, as it was highly irregular.

We argued back and forth for a couple of hours. If you’re a spoonie, you will understand that this kind of thing drains ones resources and makes travelling so much more difficult. We just don’t have energy to waste on disagreements, and yet in order to have the same rights as everyone else, we have to have these discussions whenever we do anything.

I eventually got them to concede that if I agreed to have no passenger assistance, the objectilons of the passenger assistance company were no longer relevant. And that I would await the decision of the pilot about whether or not I could fly.

So, I was left in the airport with both kids and all our hand luggage to navigate our own way across the airport to the lounge where everyone was waiting. Luckily, the flight was delayed for several hours, so despite spending about 21/2 hours at check in we still had time to have a snack and a drink and all go to the toilet before boarding.

Ultimately, the pilot agreed to transport us and the kids were perfectly well behaved (as they always are). And the toddler who caused so much concern to the not-yet-disabled crew who were alarmed that she travels sitting on my knee in the scooter? She sat on my knee, or toddled next to me holding hands. As she always does. Because this is the only way she has gone anywhere with her Mum, since she was a tiny baby. Because that’s what you do when someone in your family has a disability, you adapt and move on, or you give up.

I know that lots of you who read this blog are not-yet-disabled, and may be alarmed to think this was my experience, but this is not going to be any surprise to any of the readers who are disabled. It’s what we face every time we go out. Please bear this in mind as the Government begins another onslaught against our rights when they start to remove mobility support in DLA during the migration to PIP- they will claim that our country is fully accessible now. My experiences and those of so many others can show you how far from the truth that is.

P.S. I have some photos I wanted to share in this post- but I’m still battling exhaustion so for today, you’ll just have to take my word for it.

Guest blog by Martin Weller of @2012DaytoDay

Martyn Weller, chair of Disability Action Yorkshire, is tackling a 24 hour journey on a mobility scooter on June 30 and July 1 to highlight the everyday challenges facing people with disabilities.

He will be travelling 125 miles from Disability Action Yorkshire’s (DAY) Harrogate headquarters to the charity’s new, specially adapted holiday lodge in Kenwick Park Estate, Louth, Lincolnshire.

Using my disability journey to make a difference

I was born with spina bifida and my twin sister wasn’t.  Luckily I was born to parents who believed it wasn’t going to make any difference. We did virtually the same things (well I didn’t actually fancy ballet lessons so didn’t do that) and so throughout my childhood, apart from the operations, physio, trips to hospital and special shoes I really ignored having a disability. Of course going to main stream school and being the only disabled kid had its moments, but at least I had a better way of getting out of cross country than trying to forge a note from my mum.

As I grew up and got a job I think I actually turned from ignoring my disability to going out of my way to prove it didn’t make a difference.  I suppose looking back it was a form of denial. Turning up for a business meeting someone once said should he carry my case for me. He said, “We have a lift for people like you.” I don’t know how he knew about my Julia Roberts in a lift fantasy but I accepted!  Bit disappointing really – all it did was go up to the next floor.

Part of the denial was a reluctance to accept help, whether from someone or something – I would sooner struggle than use a disability scooter. It was only during a family trip to Florida and trying to tramp around Disneyland that I realised this was stupid – you go to the front of the queue at Disney if you are disabled!

So why when I am old enough and wise enough to know better do I come up with a mad cap scheme to ride 125 miles in 24 hours on a scooter? It is I suppose almost back to denial – other people raise money and awareness for charity why not me?

Nowadays everyone rides a bike from Lands End to John O’Groats blindfold, whilst playing the bagpipes and cooking pasta on a portable gas ring. I like to think my challenge is a bit different to those that have gone before; hopefully it raises a pound or two, whilst raising the profile of our organisation. It also publicises the fact it would be an almost impossible trip to make for a disabled person using public transport.

As the day looms I can’t help thinking maybe all those years ago I should have just done the ballet.

I’m wishing Martin every success for his Journey- I know how gruelling it is to travel anywhere as a person with a disability, and how badly served by public transport we are. He’s raising money for a great cause, so please do sponsor him if you can.

http://ramblingsofafibrofoggedmind.wordpress.com/2012/05/28/all-quiet-on-the-spartacus-front/