Not Fit For Purpose - My Seventh Fitiversary

Today is my seventh fitiversary. Seven years ago today I woke up experiencing an episode of intense back-to-back tics. They’d been happening on and off for a while but this intensification was impossible to ignore.

Since then I’ve spent very little time alone. It was a watershed moment in my life but I’ve gradually learnt to adapt to my changing body. I’ve also come to appreciate how difficult it can be for people whose bodies and minds work in non-normative ways.

My experience today was a perfect demonstration of this.

I’ve spent fitiversaries in all sorts of places, several in restaurants and even one on the beach. Today I spent it:

On a train from Inverness…
… A delayed train from Inverness…
… A delayed train from Inverness with no accessible toilet!

We’ve been in Inverness for the last two weeks working on Hacks For The Future, a project with National Theatre of Scotland and disabled young creatives. The final event was at the weekend and along with the rest of the Touretteshero team we were booked on LNER’s 9.40am service to London this morning.

My colleague Will booked the tickets several weeks ago and had been told this was the only direct train that day. Along with the tickets he also booked my assistance, which included the wheelchair space, ramps and companion seats. We arrived at Inverness station in good time for our train and were taken to board by the station staff.

They took me to the accessible area on our carriage, but Leftwing Idiot quickly noticed there was no wheelchair accessible toilet!

Leftwing Idiot and the station staff then checked all the other carriages, including first class, but there wasn’t a single accessible toilet on the entire train.

I was totally stuck. I needed to get home but how could I manage on a train for over eight hours (even without delays) with no accessible toilet? I was really worried about this as the journey is so long and my bladder issues mean I need to use the toilet very frequently.

The staff on board were very apologetic, but the only option presented to us was to travel to Edinburgh (over three hours away if there were no delays) and change on to a later service to London.

The train had immense difficulty leaving due to problems with leaves on the line just outside the station – which meant the Inverness to Edinburgh leg of the journey was an hour and a half longer than scheduled.

By the time we reached Edinburgh I’d had to crawl to the non-accessible toilet several times. This was undignified and unsanitary. It also caused me a lot of additional pain and fatigue and I had to take strong pain medication as a result.

The crew contacted Edinburgh station and offered to put me onto a different train. However they couldn’t guarantee what time this would be nor whether it would have an accessible toilet.

I was already in pain and exhausted. Changing trains was almost certain to make things worse so I decided to stay on board the direct train.

At another station on the way, staff tried to board another wheelchair user who’d been moved off another service where the accessible toilets were broken. As they started to board I explained there were no accessible facilities anywhere on the train, something the staff seemed totally unaware of. The other wheelchair user made the decision not to board.

We arrived in London shortly before 8.00pm. I’d spent over 10 hours on a train without suitable toilet provision, the pad I wear for occasional leaks was wet through, and I was in a lot of pain.

After two amazing but exhausting weeks in Scotland this was not the ending I’d hoped for. It was difficult and distressing. I’m going to write to LNER and ask them what steps they plan to take to make sure other disabled passengers don’t face similar difficulties in the future.

After a long and un-glamorous fitiversary, including crawling through carriages to wee, I eventually arrived back at the castle.

My friend Charmaine (who’s also the British Sign Language performer in our show ‘Not I’) has been staying while we’ve been away, and she greeted us on the doorstep with her one-year-old son. They were the perfect welcoming committee and within a few minutes we started putting the stresses of the journey behind us and settled back into life in London.

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