I realised in the cab on the way back from Heathrow that there aren’t many flights that I’ve done without Leftwing Idiot. On most journeys I’ve had a dedicated support worker too, but Leftwing Idiot’s almost always been there calmly organising and advocating for me. Not this time though. Jen and I headed back from New York leaving Leftwing Idiot behind in the US for a holiday.

He’d briefed Jen thoroughly and she’d taken everything in and I felt totally safe in her hands. Flying as a wheelchair user can at points be complex, stressful and unpredictable and you are very much at the mercy of the ground and air personnel.

Most of our journey was fine: the taxi arrived promptly and the driver was helpful, the man at check in could not have been friendlier and the flight crew were brilliant. There were however two very stressful incidents that meant that I cried on American soil, and Jen cried on British. Here are these two soggy tales.

Tale One – America

Very kindly the organisation who’d flown us over to New York had paid for ‘Premium Economy’ seats to help manage my pain. I’ve not travelled this way before but it was great because it meant I could lie slightly flatter and have more space for my constantly wiggling body.

The first big issue was that I hadn’t been allocated an aisle seat. This isn’t usually an issue for me but because of my bladder condition I need to go to the toilet a lot and this can be disruptive for any other passengers sitting in the aisle seat on my row. It’s also easier if my seat is really near the toilet so that I can crawl to it if I need to instead of waiting for the on-board crew to bring the special narrow on-board wheelchair each time.

Jen explained this to the check-in clerk who understood straight away. Unfortunately the way the plane was configured meant there was no toilet in the ‘Premium Economy’ cabin, so crawling to the toilet was not going to be an option. It was also a full plane and there were no aisle seats available, but the clerk called ahead to the gate, explained the situation to them, and assured us we would be seated appropriately.

At the gate Jen went and asked for the person she’d been told to speak to, but they weren’t there. When we talked to the crew members who were there, we were made to feel that asking for an aisle seat was unreasonable. Jen spent ages telling them why one was necessary but they said the only thing to do was to ask the passenger on the aisle to swap with me, but that they couldn’t make anyone move. At this point I assumed that I’d have to slide across into the middle seat and that the person most inconvenienced by this would be the person on the aisle.

It turned out that this assumption was wrong. The assistance team from the airport put me into the narrow aisle chair and helped me board the plane, but when we got to our row it quickly became clear that I was not going to be able physically to access the seat allocated to me. It was not an aisle seat and unlike most aircraft seats the dividers between the chairs were fixed and could not go down. This meant I couldn’t just slide across. There was no way I could stand to lift myself over the rigid armrest, and there was no room for anyone to help me do this either.

I sat in the on-board aisle chair while everyone around me argued about what to do. We were repeatedly told that we’d have to ask the aisle-seat passenger to swap but that there was nothing more they themselves could do. Other passengers started to board and I was still sitting strapped into the aisle chair, blocking the aisle in full view of everyone, with people fussing and bickering about what to do with me.

I burst into tears.

Not a few quiet tears but floods of emotion. I was shocked by how upset I got and how quickly. It wasn’t just the immediate situation but the build-up of stress and being made to feel like a problem.

By this point two people at check-in, three people at the gate, all the on-board flight team and at least one other passenger had been told about my tics, mobility and bladder issues. That’s at least twelve total strangers given intimate information about me. Jen was also having to tell person after person that I couldn’t physically get into the seat assigned to me – while I cried. Jen and a fellow passenger comforted me and everyone else flapped about.

Eventually the aisle-seat passenger arrived and Jen explained what was happening. He agreed to move and Jen and I thanked him. One of the flight attendants then took him to one side and he never came back – Jen said he’d been bumped up for ‘doing a good deed’.

I at last transferred into the aisle seat and settled into the flight.

Tale Two – Britain

The flight was smooth and although getting to the toilet using the aisle chair was exhausting, the on-board crew made it as easy and comfortable as possible – they even put a blanket on the toilet floor to make it as hygienic as possible when I crawled across it.

The second issue started after we’d landed safely. All the other passengers were able to get off immediately, but it would take about another forty minutes and significant risk of injury and arrest before we were on our way to passport control.

After everyone else had disembarked, Jen got our luggage down and took my wheelchair cushion and side-guards so she could go and set up my chair. She said she’d only be a few minutes, but she never made it back.

My chair wasn’t at the plane door and neither was anyone with the equipment needed to get me off the plane safely. Jen looked around for my chair or for someone to help, and asked a man who was waiting with a big purple airport wheelchair which she assumed was for an elderly passenger we’d seen boarding earlier. He directed her to a man in a high-visibility vest (who we’ll call, Mr High-viz).

Mr High-viz said my chair was “up top”. Jen didn’t know what this meant so she asked him again. He indicated that she should follow him and started to walk off. She asked how far it would be and explained that she couldn’t leave me in case I had a ‘seizure-like episode’. She said someone else would need to get the wheelchair so she could go back to me, and then he said “If you step back on that plane you will be arrested.”

This is where things get really ridiculous. There I was on the plane with all our hand luggage and without any support to keep me safe or help me transfer from my seat, while Jen was outside, unable to see or reach me, and faced with repeated threats of arrest.

She explained to High-viz that I had Tourettes, made involuntary movements, was unable to walk or stand, had to have my own wheelchair with a seat belt on it, and that in addition to seizures I also had self-injurious tics. He was unrelenting, blocking her path and warning her again that she would be arrested if she tried to board.

He was also annoyed that the special assistance team and equipment weren’t there to get me off, but apparently made little effort to do anything about this.

The rule he was enforcing is not one I’ve ever come across before and had never been explained to Jen by anyone.

Eventually my wheelchair turned up. Jen set it up and pushed it up to the plane, provoking further threats. Now all that needed to happen was to get me to the chair safely.

All this while I had no idea what was happening, although I was eventually told that Jen wasn’t being allowed back on the plane. She was getting increasingly distressed and unsure what to do, surrounded by people, but with none of them helping her.

Eventually the on-board flight team got fed up with the lack of assistance from the Heathrow team and decided to take matters into their own hands. They got the little on-board chair that’s kept on the plane, and helped me transfer into it. This was putting themselves and me at some risk as they were unfamiliar with my body and not trained to do this, but there seemed to be no other option.

Eventually we made it safely to the plane door. Jen got me into my own chair and we sped off. Once we were away from the plane she started to cry. She told me how worried she’d felt and how horrible it had been to be separated from me unexpectedly, and to be threatened with arrest. All this late at night at the end of a long flight.

We had a cuddle and took a few moments to calm down. I reassured her that she’d done a great job in impossibly difficult circumstances. We sped through passport control and into the waiting cab.

Safely in the taxi we were at last able to relax a little, away from judging looks and ridiculous and dangerous rules.

My support requirements should not have come as a surprise to the airline. They’d been clearly specified when the flights were booked months before, but every step of the journey was hard. I’d felt unexpected, unwelcome and on show, and consequently an already tiring journey was made inordinately more exhausting and humiliating.

And it’s not just an issue of air travel. If you’re not a disabled person I’d like you to imagine if every bus, train or plane journey involved all of the following:

• Being asked to keep repeating personal medical information to strangers
• Being continually asked to publically detail what you can’t do
• Being expected to constantly feel and express gratitude
• Having to take risks with your safety or dignity
• Never knowing if you’ll be able to go to the toilet or if you’ll have to wet yourself
• Watching the people you’re traveling with be put under intense pressure
• Being made to feel like a problem others need to solve
• Not knowing if you’ll be able to get to where you’re going

I’m not sharing this to complain, (although I will be complaining to the airline and to Heathrow) but to make visible the extra effort and stress of travelling as a disabled person. This is something I feel all service providers have a shared duty to address.

I’m now safely back at home and in my own bed, with the stresses of the day seeping away into sleep.