We’re on tour with Backstage In Biscuit Land again. We’ve been performing in Sarajevo for the last few days and at 4:00 this morning we left for Ireland.

Sarajevo is a beautiful city, full of generous, friendly people, but it’s not accessible. For the last few days every trip to the toilet has involved me crawling into standard cubicles.

I identify as a disabled person according to the Social Model of disability. I’ve written about this many times before. This recognises that individuals are not disabled by their impairments but by society’s failure to consider difference in their environments, attitudes or systems.

So, to use going to the loo as an example, it’s not my impairment that’s prevented me from going safely for the last few days – I can do this perfectly well if there’s a large cubicle and grab rails. It’s the lack of accessible toilets that’s been the disabling factor.

As I crawled across a public toilet floor in Zagreb Airport at 7:00 this morning, in front of a queue of other women, I was acutely aware that no one had considered a body as wobbly and unpredictable as mine is when it was designed.

We’ve had three flights today and air travel makes me anxious. That’s not because I tic provocative things like: “Bomb!” or “The engine’s on fire!” but because I get separated from my wheelchair when it has to go in the hold.

I once watched from the window of a plane as my chair was hurled onto a baggage trolley and it made me wince. Intellectually I know it’s not part of my body, but the connection I feel with it is deep and instinctive. So when it emerged from the second plane today with new dents and scrapes I noticed them all.

A few hours later as I attempted to board an Aer Lingus flight to Dublin my body once again became a spectacle, this time because of a piece of discriminatory policy.

Every time I fly I need to be strapped into a special chair, lifted onto the plane, and wheeled along the narrow aisle to my seat. Most airlines allow me to board before anyone else. But Aer Lingus have very tight turnarounds between flights, and if the plane’s still refuelling when they start boarding, their policy is that wheelchair users have to wait until last. This means getting on when all the other passengers are already in their seats, which makes the process much harder, less safe, and puts me and my body on display in a humiliating and unequal way.

Today this was compounded by poor communication between the airline and terminal staff. The result of which was:

– I was waiting at the door of the aircraft before other passengers boarded but without the equipment and assistance to board. This meant a plane’s-worth of passengers marched slowly past as I waited to board

– The noises of machinery outside the plane over-stimulated my body and increased my involuntary movements, drawing even more attention

– The special chair I needed to get me to my seat failed to arrive for a long time, delaying the departure of the flight

– The friends I was travelling with me got upset and anxious on my behalf and this lead to tense exchanges with the flight team

– I was wheeled to my seat in front of other passengers who were straining to see what was happening

– I burst into tears the moment I reached my seat, the humiliation and anxiety surging out in a way that was visible and audible to everyone around me

It goes without saying that this was not a great start to a flight. I raised my concerns with the teams at the airport and on board and will have to make time to write to Aer Lingus to let them know exactly how this policy can impact on people.

I talk about the social model of disability a lot. It’s been hugely important in how I’ve come to understand my identity, my body and my expectations. When I explain this way of thinking to people who are new to it, they often get it quite quickly, and as I’ve described before, lots of children seem to take this approach instinctively.

But what’s much harder to communicate to non-disabled people is the cumulative impact of disabling spaces, systems or attitudes.

Knowing that most things I want to do will nearly always be more complicated, take longer, and involve compromise can be stressful.

Having to explain my body, my access requirements, or my perspective over and over again is exhausting.

It’s hard to remain resilient in the face of the relentless problematisation of my body, of frequently being associated with increased risk, or of being made to feel I’m being demanding when I’m just expecting equality.

It’s been a long and difficult day; my body, the barriers I face, and the pain this can lead to have been extremely visible.

I needed to write tonight to reflect on the barriers I’ve encountered and acknowledge their impact. I’ve gently reminded myself that they’re not my fault and counteracted my distress with pride. I’m proud of myself, my body, and of disability culture.

To anyone feeling that their body doesn’t fit, hasn’t been considered, or is a problem, I send my love, respect and solidarity.

Let’s keep speaking up, speaking out, and working to remove barriers wherever they exist. Whether that’s on land, sea or in the air.