What happened to my daughter before Taylor Swift is every parent’s worst nightmare

It was the third night of the Taylor Swift Eras Tour in London. After queuing outside all day in the sweltering heat, my two teenage daughters and I had managed to get seats in the second row from the front. We had been dancing and singing our hearts out for a couple of hours when my eldest had a fit.

While 85,000 Swifties screamed the lyrics they know by heart – like most people know the phone numbers of their loved ones – Sophia – who had just told me she wasn’t feeling well – lay on the wet, sticky plastic floor of Wembley Stadium.

Sophia, 19, is an epileptic. She is not photosensitive and had been given medical clearance to attend this concert – the most spectacular night of her life – but I still immediately felt foolish for bringing her and her younger sister Ellie (who is only 14) here and putting us in this vulnerable position.

Soon the paramedics arrived. I was about to give Sophia the emergency medication when one of them tried to lift her into the rickety turquoise wheelchair he had arrived in. Having a child with a disability as unpredictable as epilepsy really tests your ability to function under pressure. Even there, surrounded by all these screaming strangers and with my daughter’s idol just a few feet away from us, I had to stay alert and able to communicate in order to be able to ask questions of the medical professionals present.

I told him we were not allowed to move her while she was having a seizure. But he was impatient as we were surrounded by thousands of people, so I administered the medication on the spot and – moments after her body began to relax – he hoisted her into the chair. The crowd behind us parted as if in some elaborate choreography and I was instructed to walk in front and hold my daughter’s hand while the wheelchair grabbed my legs from behind like an aggressive dog. There was no time to turn around and all I could think about was whether my other daughter and the (adult) friend we had travelled with were keeping up behind us.

I was so sad to leave the concert early, especially because I knew my girls would be devastated. I knew what that night had meant to them and to me, emotionally and financially. It had taken an incredible amount of effort to be there. We had driven five hours from the north of England, stayed in a hotel, and then queued for eight hours in the blazing sun outside the stadium to get one of the best seats in front of the barrier. We didn’t even get to see the unforgettable moment when Travis Kelce joined her on stage.

People may say it’s just a concert, but for my girls it was a moment of joy after all the challenges we’ve faced with chronic illness over the past year. It was supposed to be a night of songs and sequins and glitter and friendship bracelets and joy. And at least for the start, it was Was a night filled with joy and we were a happy part of the Swiftie family. Until it wasn’t.

Suddenly we were taken to the medical center behind the stadium and then to the hospital. The paramedics told us that only one person could travel with Sophia in the ambulance and the others would have to get there on their own – without a car; while 100,000 people were leaving the stadium. In the end, they offered to show my friend the best place where he could get a taxi, but it turned out to be an area where all the roads were closed. They had to walk for half an hour to get a subway, shaken and confused.

A few hours later, exhausted and heartbroken in some London hospital, all I could think was: How did we get here? And how is this fair?

When we booked the tickets a year ago, my daughter had not yet been diagnosed with epilepsy. I settled on the only tickets available to us in the sheer stress of the fast Swift lottery – four VIP tickets for the Ready For It package that cost so much it made my heart race. But it was important and valuable to us as a family – as a single parent raising teenagers – so I planned to pay the tickets off and clicked buy.

When my daughter was diagnosed with epilepsy, all tickets for disabled people were sold out and we were faced with a dilemma. To go or not to go? This is a dilemma that people with reduced physical ability probably know well. To miss something or not to miss it? To give up on her dreams or to risk it? According to my daughter’s doctor, there were no medical reasons not to attend the concert – her medication was effective and the truth is that epilepsy is like other disabilities: something you can only learn to cope with.

We did our best to plan for every eventuality, and after a long day of queuing, we made it into the arena. It was immediately clear what awaited us: we weren’t allowed to take water inside, and to get a decent view, we had to stay in the front seats we’d fought so hard for, rely on the small amounts of water the staff gave us, and avoid the bathrooms for the next six hours. Competition for our seats was fierce, and it was very unlikely we’d be able to get back to our seats – and each other – once the concert started.

I was worried about my daughter, but she was fine, so I kept my fingers crossed. I know some people will say we didn’t have to get a good view from the front. You might scold us for waiting in line for so long in the summer heat. But shouldn’t my daughter be able to enjoy a good view at a concert? Shouldn’t people whose bodies behave differently be able to participate in iconic experiences that are important to them?

As it went down, I felt all the hopes she and her younger sister had brought with them to London from Cumbria disappear with it. They had been looking forward to experiencing the light bracelets and fireworks they had seen all over TikTok. They had detailed plans to collect some confetti from the final number to make a memory box. They had believed for a while that we could exist among all these people and enjoy something so special – that we could get away with it without epilepsy spoiling everything.

Disabilityism is rife in society; accessibility means more than ramps and audio assistive technologies. I knew it when my 17-year-old son, who lives with autism spectrum disorder (ASD), decided not to come at all a few weeks before the big night. We were disappointed, but I understood; expecting him to queue for so long – to stand in a confined space with 85,000 people while struggling to leave his room on some days – would be asking too much. But I saw it in full force when I stood with my daughter right in front of the world’s biggest star.

I don’t want to be Taylor Swift – dealing with that level of fame and expectations must be difficult indeed. She can’t possibly please everyone. But maybe it’s time for the most influential influencers to start addressing how anti-disability culture we take for granted is? Maybe it’s time to recognise who is not at such concerts – the fans who cannot withstand the demands of such an extreme endurance challenge.

Don’t people like my daughter deserve to stand at the barrier like the rest of us and experience “Shake it Off” and “Fearless” live?

Of course we face challenges that other people don’t have. Nobody can do anything about it. But there has to be a way to be more inclusive.

I don’t have any answers as to how to do this better—I wish I did, for my daughter’s sake. But when I think about the power and resources of a groundbreaking artist like Taylor Swift—who became a billionaire for the first time just this year—I can’t help but think that it’s must possible to make life easier for families like mine.

There must be a way to demand – and fund – a tour that offers a more radical approach for people with health problems or disabilities who dream of seeing their idols up close and hearing their favorite music live.

There has to be a better, fairer way than waiting for hours on hot sidewalks and in front of barriers, needing water. Taylor knows “only too well” what her concerts mean to her fans and how much they love her. Isn’t it time artists found a way to give some of that love back?