Just over a week ago, I went to BBC Radio 1’s Big Weekend in Coventry with my friend. I’d won the tickets because a few weeks before the festival, I’d been to the Student Radio Association’s conference where during a talk on how to put on a live event, I’d asked the speakers how they were trying to make festivals like Big Weekend more accessible to disabled people. Originally, I wasn’t going to ask the question at all because frankly, no matter how much I share with the internet, I do still feel incredibly lame every time I bring up disability in front of a crowd. So, sitting there, in a room full of strangers – many of whom, I was trying to impress – my instinct was to avoid the topic for fear of tokenising myself. But then again, as my Mum and Dad say: if I’m going to do this disability representation thing, then there will be times when I have to fight my ego, and just ask the question.

I’d never been to a music festival before. That wasn’t because I’d never wanted to, it was just not something that I thought I’d be able to do, given that the two main taglines for my Spina Bifida are that I can’t stand for long, or walk far. So, I just learnt to compartmentalise the jealousy I felt when I saw friends posting photographs of each other covered in glitter in the middle of a crowd, dancing to the tunes of some of my favourite artists, in the same way that I’ve accepted I’m never going to go ice skating. But, as many disabled people are likely to tell you, I’m excluded from experiences such as these not by my ‘condition’, but by society not really bothering to try and get me involved. However, there are plenty of people who want to change that and it’s not always useful to base the conversation around accessibility on all the things the able-bodied world does wrong.

Obviously, I completely loved Big Weekend: I danced for hours until my legs ached, I pushed my way to the front to see an artist I’m not even that fussed about, I ate greasy food from a burger van, and I got a bit emotional at the beauty of sharing all those experiences with strangers in a field. But, I’m disabled, so it was unsurprising that I also had some not very nice moments during the weekend.

The festival had lots of things put in place to try and make it accessible, and when it came to the company and the people working within it, I have my hand on my heart when I say that I felt like they were sincere in wanting to make everyone feel welcome. However, individual people work these events, and it was the individual’s understanding of disability which created issues for me. For example, on the first day of the weekend, I wore trousers which covered my callipers – something I know makes people totally unaware of my disability. On that day, because I don’t look ‘disabled’, each time I asked to cut through barriers so that I wouldn’t have to walk all the way round or if I could please be directed to the accessibility exit closest to me, I was consistently doubted and questioned – even after saying it was because I’m disabled. Whereas the second day when I wore a dress so my callipers were on full display, I didn’t even need to finish my sentence before barriers were lifted, no questions asked.

This kind of experience wasn’t unique to BBC Radio 1’s Big Weekend, though. I get this everywhere I go, whether that be in an airport asking for disability assistance from one terminal to the next, or simply driving into a disabled space outside the shop. I’ve had people tut at me, roll their eyes, knock on my car window to ask me what I think I’m doing; people have told me ‘no’, accused me of ‘stopping people who need this help from getting it’, and I’ve even had my name removed from accessibility lists because someone took one look at me and assumed that it must’ve been a mistake.

So yes, I love love loved BBC Radio 1’s Big Weekend and it did make me feel for the first time like I’m also invited to music festivals, and I do trust that the BBC has every intention of improving the accessibility of its events and internal structures. But when I speak about accessibility and disability inclusion, I’m going for more of a paradigm shift: I want everyone to change the way they understand and perceive disability. It’s a hefty task, it’ll take a hot minute, and it’s as much the responsibility of the individual as it is of the institutions, but I’m an optimist, so I think it’s possible.

This is about individuals engaging with their preconceptions of disability and how they react to situations – both passively and actively. How do you see me? How should I look? Why do you think I’m lying? These are the questions we need to ask each other because organisations can put provisions in place, but those provisions are useless if the people with the power to let me access them are going to make me beg.