In April, we caught the train from London Euston to Glasgow Central. We were in London for the MDUK Stronger Together Awards, where I was nominated for the Community Support Champion award, which I won 

We’d just passed Wigan when the train came to a halt. We sat for around 20 minutes until an announcement informed us that we’d be going back to Wigan.

There was a plastic bag on the overhead wires that meant we couldn’t go forwards, only back.

When we returned to Wigan, a further announcement explained that the train was no longer running and passengers should exit the train.

Everyone shuffled around us and stepped off.

But the staff forgot about the wheelchair user, me.

Nobody came with a ramp or even to check on us, so my wife stepped off to see if she could get help. I sat for 10 minutes before deciding to see if I could summon train staff.

I pressed the emergency button at my seat, sat for a few minutes and nothing. I moved to the doors and pulled the lever there; again, nothing.

A further 10 minutes later, station staff arrived with a ramp and I got off. I was advised that it was okay, as they would have done a sweep of the train eventually.

Yeah, not impressed.

We made our way to a Preston-bound train on another platform to change over.

We got to the train and were told there was standing room only, so we couldn’t board. I mean, my wife could have gone to Preston and started a new life, but there was no chance I was getting on it.

We then went to the assistance area, where we waited for two hours before getting on the next train.

During those two hours, there was a lot of back and forth. The person helping us seemed to be getting conflicting information on alternative routes.

At one point, an hour in, we were offered a taxi to Glasgow, which I certainly appreciated, but that’s a loooooong drive and I’d definitely have had to ask the driver to pull into a service station or two so I could use the toilet.

I didn’t really fancy tapping his shoulder and asking if he could please let me go to the little disabled boy’s room. So waiting was the only real choice.

To their credit, Avanti put us in first class, but only after we lost two and a half hours.

However, the fact remains that if I wasn’t a wheelchair user, I would likely have boarded that Preston train as so many others did.

If the train staff hadn’t failed to ensure that passengers who require assistance were helped off the train, I would more than likely have boarded that Preston train.

Disabled people regularly face the Time Tax: the mandatory requirement to spend additional time making sure their basic needs are met.

There is an expectation that we can just wait because we couldn’t possibly have anything better to be doing.

We exist at the mercy of failed assistance, of buses with a single wheelchair space, meaning if another wheelchair user is on board, you’re waiting for the next one, or in some scenarios, ignorant people refusing to vacate the wheelchair space whilst drivers put their heads down.

Disability has a financial cost, but there’s a time cost that few people are speaking about.

That’s the Time Tax.

And when you live with a life limiting condition – that’s far too much a cost, as far as I’m concerned.

I’d love to hear about the extra time you find yourself spending day to day, simply existing as a disabled person.