Trying To Get Tickets To The ERAS Tour As A Disabled Person

Posted on August 27, 2023

TW: Mentions of ableism, severe depression, suicidal thoughts and ideation.

Us international Taylor Swift fans have been waiting for The ERAS Tour to come and visit us for months and finally, we have dates! (Through some bizarre twist of fate, the announcement, the registration, the extra dates announcement, and the opening of resale tickets all occurred while I was at therapy, so I don’t think it would surprise anyone to learn that I rescheduled the sessions that were booked for the days of the actual ticket sales – thank god for my very understanding therapist).

So the tour is coming – possibly the most exciting event of next year – but before I could be excited about that, the ticket sales had to be navigated. And given how horrific the US sale had been, I was – at the very least – very apprehensive. I hoped that, after the previous fiascos, this sale would be smoother but, having witnessed the anxiety and misery and disappointment, I couldn’t help but worry that this sale would be just as bad, with the added hurdle of trying to get accessible seating.

Having pre-ordered the Midnights album during the period in which it granted you a code for tour dates, I had access to the ticket sales a week earlier than the ticket sales for which you had to register. That was definitely helpful, in some ways at least. In the week leading up to this first sale, my Mum and I spoke to the Wembley accessibility people several times, trying to get the most accurate information about getting tickets through them. My Mum had to actually make the calls since making a phone call is something that is a real struggle for me as an autistic person, especially when the phone call has high stakes or I have anxiety about it (I can handle other forms of communication – I just can’t gather enough information from just a voice to keep up a conversation in real time and the anxiety of screwing up just makes the processing worse and the whole thing snowballs until I become non-verbal or descend into a meltdown). So Mum made the phone calls and we tried to get the clearest picture we could, but the information changed with every call and, on the Friday (with the tickets going on sale on Monday morning), they still weren’t sure of anything. They were really only certain of one thing: they were very, very aware of how high the demand was, part of the reason why they were so reluctant to commit to any of the information they did have. It was very stressful and I spent the weekend consumed with anxiety over whether or not I would be able to get tickets to even one show, having hoped to go a couple of times with different friends and family members. The dread I felt at the thought of not getting to go was paralysing.

Most people don’t seem to understand the intensity of my emotions. Technically, it could be part of being neurodivergent or mentally ill but it’s always just felt like part of me: it’s me, hi, I feel everything at 500%, it’s me. I feel every emotion with my whole body; it’s just always been that way. And people have always been weird about it (especially when it comes to loving Taylor actually – I’ve been mocked and harassed for years for being a fan of hers, often for reasons that completely baffle me). It hurts – and that hurt is very intense too – but I’d always rather love things, regardless of what people say. Taylor and her music (and seeing her live) are and always have been so important to me, getting me through hard times and bringing me such life affirming joy; as hard as it can be, it doesn’t surprise me that the thought of not getting to see her live after waiting so long feels like a lifeline being cut.

Monday morning, I woke up so anxious that I couldn’t eat. I couldn’t do anything. When the time came, when the online queue and phone lines ‘opened,’ Mum rang the accessibility number. It rang and rang until it went through to an automated message before hanging up. We tried again. And again and again and again. We kept getting the same message and we were still calling when the queue moved from the first of the Wembley shows in June to the first of the Wembley shows in August in the early afternoon. We were still calling as the clock inched towards five and the closing of the phone lines. I’d been sitting with Mum, unable to do anything and on the edge of the meltdown all day. I was exhausted, in pain, and swinging between misery and rage, in tears over how awful the experience was. It was (and still is) so desperately distressing that it seemed literally impossible to get a ticket for accessible seating, to access the concerts as a disabled person. It just felt – and feels – like yet another part of the world telling us that we’re not worth the effort, that we don’t matter as much as everyone else. It’s a deeply hopeless feeling. And as if the situation wasn’t hard enough on its own, I’ve been struggling with suicidal thoughts and impulses for a while now and between the dwindling possibility of getting accessible tickets and the crushing display of ableism, those thoughts were only getting louder and more difficult to block out.

Tuesday was more of the same, just with an awful day and awful night’s sleep under my belt. Mum and I were glued to the sofa again, calling over and over and over. Morning turned into afternoon, another show disappearing. Wembley Stadium had tweeted a response to the criticism on social media: “Due to unprecedented demand waiting time for Taylor Swift | The Eras Tour Disabled Access is longer than normal. For those unable to wait on the phone we have a call-back system.” Seeing that filled me with the urge to throw my phone across the room: when we’d spoken to them, the ‘unprecedented demand’ was the only thing they had known about. I wanted to scream.

The night before, a friend had suggested looking at Twitter to see if other disabled fans had posted about having a similar experience. I didn’t remember her suggestion until the afternoon but once I did, I went searching and found my experience repeated over and over. On one hand, it was reassuring because I wasn’t alone but on the other, here was this huge number of people who weren’t able to get tickets because Wembley’s accessibility department wasn’t doing its job. I spent the afternoon tweeting back and forth with this group of people: trying to find a better way, sharing different phone numbers that different people had had success with, updating each other on our progress, sharing the successes and the miseries and frustrations. One fan, Faith Martin (she wrote a great piece for Metro about what the experience was like was disabled fans), spent an amazing amount of time trying to help people get tickets, long after she got tickets for herself; I really appreciated her support and encouragement. (I’m sure there were other fans doing this, helping other fans for other UK venues but Faith is the person I saw doing this, the person who helped me.) Having that little community in such a fraught time was comforting; I’ve never had anything like that before.

Eventually, just before the lines closed for the day, we got through and were finally, finally able to get tickets. When my Mum hung up the phone and triumphantly announced that we had tickets, I collapsed back onto the sofa and burst into tears. I was overwhelmingly relieved but also totally overwhelmed by the exhaustion and anxiety making my hands shake, by the excruciating pain in my limbs, back, neck, and skull. But most of all, I was just completely overwhelmed by how hurt I felt by the ableism of the process (especially compared to the ease of the online general ticket sale), by how little my very existence meant to them even though I was paying them for the space I would be inhabiting. God, you know it’s bad when you’re paying to take up space and still no one cares because of the ‘inconvenience’ you present. I was pleased – of course, I was – but all the other big emotions were drowning it out. I knew I’d be thrilled later on, once I’d recovered from the unbelievable stress of those two days.

And it’s true. It took a couple of weeks to fully return to my day-to-day state but now that I have, I am really, really excited. But having said that – and I know I’ll say it a lot over the next year – I still feel hurt by how Wembley handled it all, how they treated their disabled patrons. I’m hurt and I’m angry and if there was anything I could do that would affect any change, that would be more than me simply shouting into the void, then I’d do it. Without a second thought. But if there is, I have no idea what it would be. So here I am, sharing my experience about, if only to remind people that this sort of thing – and worse, of course, much, much worse – happens every day. Even the processes set up supposedly to help us are failing us, and worse, hurting us.

I’ll leave you with what I tweeted after I got my tickets: “I knew that getting #ErasTour tickets would be hard but I didn’t expect the level of ableism. By making it so much harder for us, they’re essentially telling us that we aren’t as important as everyone else, that we don’t matter as much, and that was deeply, deeply upsetting.”

And here are some of the articles that have been written about this, including the experiences of several disabled fans. (Note: please don’t read the comments sections of these articles because the dismissive, ableist bile coming from people – most of whom are totally missing the point – is honestly painful and there is no reason to subject yourself to that if you don’t have to.)

(1) (2) (3) (4) (5)

 Category: about me, anxiety, autism, chronic fatigue, chronic pain, depression, emotions, family, heds, meltdowns, mental health, music, special interests, suicide    Tagged: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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Mental Health Awareness Week 2022

Posted on May 14, 2022

I have to admit that I often struggle with Mental Health Awareness Week, particularly the flooding of social media with “it’s okay not to be okay” and “reach out to someone if you need help”; it makes me want to scream in frustration because we are so far past that. If we’re going to create better support for mental health, we need more than that. This year, the theme is loneliness, which is an apt one, two years and change into this pandemic. I’m certainly seeing a lot of loneliness around at the moment: those with mental health issues, disabled individuals, people who are still shielding and feeling abandoned by society because of the dropped mandates… I can’t imagine what it’s like to be in or from Ukraine right now…

All of these situations need to be talked about and since the Mental Health Foundation is encouraging everyone to share their experiences with loneliness for Mental Health Awareness Week, I thought I’d write about my experience, as a disabled person with mental health issues.

This is something I find kind of hard to talk about. I guess talking about it – and writing about it – makes me feel a little guilty because I’m not alone. I know I’m not alone. I have a great family and some really wonderful friends who have been there for me through some really tough stuff. They try so hard to make sure that I don’t feel alone. Fortunately, we – as people – don’t need to understand each other’s experiences point for point to find friendship and create those important, supportive bonds: I have a friend who has experienced very different trauma to me but there have been a lot of similarities throughout both of our journeys that have made it possible for us to relate to each other. I’m grateful for that, more than I can say.

But it’s also true that I do, often and increasingly, feel alone, feel lonely. And I think that that’s because no one – no one I’ve found at least – really understands what it’s like to be in my head, in my body, in my life, dealing with the problems that I have and the ripple effect that they can create. I’ve had multiple doctors and medical services simply stop helping me (or refuse to help me at all) because my case is “too complicated.” These are the professionals – the people who are supposed to really know and understand this stuff – and even they don’t know what to do with me (and those abandonments, plus other abandonments in my life, have left me with a lot of issues and fears that I have to work on every day). I think the issue is compounded by the fact that I have multiple diagnoses so, even though I may fit into the autistic community, I still don’t feel like I fit in because I also have OCD and BPD and so on; I can’t imagine there are many people who fit into the same community as me when the criteria is so narrow. I’m also not entirely convinced by the idea of community based on diagnosis either, to be honest, especially when the diagnosis covers such a range of symptoms, behaviours, and experiences, like Autism Spectrum Disorder. Anyway, my point is that I don’t feel like I fit in, even with the people that, on paper, I would likely get along with.

As I said, I’m not alone. Even though I’ve never felt like I quite fitted in, I have some great friends and friends from all areas of my life: school, sixth form, uni, Masters, as well as stuff outside education… But I can’t always keep up with my friends, with my peers, and I can’t always do the things I wish I could and I find that so hard. I always end up feeling like there’s a gap between me and everyone else and it’s lonely. Not being able to physically keep up with those around me means that I often feel left out – even if that’s nobody’s intention. And there’s a level of embarrassment and shame about being the one who can never keep up, the one who is always asking people to wait, always having to double check or change or cancel plans. I don’t know where that comes from – I know my friends would never want me to feel like that. But still, it’s there. It widens the gap and it makes that loneliness worse.

The older I get, the more I notice it – the gap. While I spend my time trying different medications, going to appointments for my physical and mental health, and resting after doing what I can manage to do, a lot of my friends are pursuing PhDs, establishing careers, living independently, and building lasting relationships. Our life experiences are just so different. And the longer it goes on, the bigger the disconnect feels. It just feels like the future is full of loneliness and I don’t know what to do with that.

I know this is kind of a depressing post. It’s a depressing truth, although it might have come out differently if I weren’t coming off my antidepressants; if I were in a better place mentally, I might have a more hopeful outlook. I don’t know.

I don’t think it’s a bad theme – loneliness can have a devastating impact on a person’s mental health – but the Mental Health Foundation’s website says that they want to “shatter the stigma around loneliness” and while I can’t say that there’s no stigma associated with loneliness, I can think of so many things that might have more impact as a theme, might make more of a difference, like access to mental health support or the impact of social media or… I don’t know, something more specific than loneliness or nature (last year’s theme). (I talked about this more in my Mass Observation Day post.) As I said at the beginning of this post, I find Mental Health Awareness Week difficult because I so often feel like the information being circulated is somewhat obvious, that we could – and should – be going deeper. I guess it all just feels a bit surface level but I don’t know how that changes, if anyone else even feels this way. It just doesn’t feel like enough. It’s one week a year and it doesn’t feel like enough.

 Category: about me, autism, bpd, chronic fatigue, chronic pain, covid-19 pandemic, depression, emotions, family, heds, medication, mental health, therapy, treatment    Tagged: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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I Believe In Nashville

Posted on April 17, 2022

Apparently I’m incapable of doing things halfway: I went from barely leaving the house to going on an almost three week trip to the US. The songwriting festival, Tin Pan South, was starting up again and I’ve been going every year since 2016, to write songs and network and just learn from the best songwriters in Nashville. I was utterly terrified – about the COVID risk, about how even a minor bout of COVID could affect the trip, about all of the uncertainty and anxiety that I was going to feel every day without having a true safe place to return to and recharge, etc – but I felt like I had to go. My Mum and I were as careful as we could be: we wore masks pretty much all of the time (being autistic makes that hard but I did the best I could) and we went through so much hand sanitiser. I was practically showering with it. I cried pretty much every day (whether from anxiety, stress, or exhaustion, I don’t know) and I was on my knees by the end of the trip but it was amazing and a lot of really cool things happened.

BOSTON

We flew from London to Boston, which was relatively simple – my anxiety aside. I’d already burst into tears at least twice before we actually left the runway. I was very anxious about COVID (and there were so many things that already made me anxious that now had an entirely new context because of COVID) and about flying (it’s not my favourite thing) and I think I was just really overwhelmed by everything ahead of me. The flight felt ridiculously long and while I was relieved to be back on the ground (and eventually into the hotel where we could take the masks off after wearing them for so long), I was immediately overwhelmed by being abroad, by all of the differences. Getting to the hotel room and being able to just collapse was a great relief.

Months earlier, I’d bought tickets to the Bleachers show where they’d be playing their album Strange Desire from start to finish in the hope that I’d be able to combine it with the Nashville trip – the date was, after all, pretty close to when Tin Pan South usually took place. So I chanced it and by some stroke of luck, it worked out and we made our connection in Boston with a day in between to go to the concert. I had no idea what the disabled accommodations were going to be like but, on the whole, the venue and staff were great, which made the concert possible for me and it was incredible.

I still don’t know if I can describe the concert, beyond saying how amazing it was. Charly Bliss were a really fun opener and I’m very excited for them to release the new songs they played; those were the ones that I really got into. And Bleachers were just fantastic. Jack Antonoff in particular was just like an endlessly ricocheting ball of adrenaline; I barely got any photos of him that were in focus because he was just in constant motion. It was so incredibly special to hear songs like ‘Wild Heart,’ ‘I Wanna Get Better,’ and ‘Like A River Runs,’ all of which I love so much. It still feels kind of unreal, like I can’t quite believe I was really there.

The next day, we struggled up – I felt completely wrecked by the concert – and caught our flight to Nashville.

NASHVILLE

When we got to Nashville, we took a couple of days just to rest and to allow me to collect myself. I was exhausted and a few days holed up in my Airbnb – where I didn’t have to worry about wearing a mask or the risk of COVID – was absolutely needed. And while there are always things to see and exploring to do in Nashville, we’d decided to keep our excursions to our highest priorities; we wanted to minimise the risk of exposure to COVID so that we could do all of the things that we really, really wanted to do.

So those first few days were spent chilling out, watching TV, catching up with my diary, and listening to Maren Morris’ new album, Humble Quest. I think I’ll forever connect it with Nashville now. Between listening to it as I flew into the city and watching her Amazon Prime show that first weekend, the album’s setting will always Nashville.

The show was great and I cannot wait until she comes back to the UK. I’m already in love with this album.

SONG SUFFRAGETTES 

My first show back was a big one: Song Suffragettes’ 8th Anniversary show. Usually a Song Suffragettes show consists of five girls and they go around three times, performing three songs each (in total), before closing the show with the cover song performed together. But for this song, there was the first round of five girls who each performed twice plus a cover, a break in which THE Nicolle Galyon interviewed THE Kelsea Ballerini, and then a second round with five more girls who each performed twice as well as a cover song. It was a long but very excellent show.

The first round consisted of Ava Paige, Autumn Nicholas, Kalie Shorr, Ava Suppelsa, Lanie Gardner, and Mia Morris on percussion (she also played a song in this round – a rewrite of Fountains of Wayne’s ‘Stacy’s Mom’ from the point of view of Stacy, which was hilarious). They were all great but, as I think is the case with every songwriters’ round, there were some that resonated with me more than others. I’ve known and loved Kalie for years so I always know she’s going to be my favourite (if you haven’t listened to her music, please check her out – she’s very special) but I didn’t know the others and found I particularly enjoyed Ava Paige’s songs too. I also loved the cover they did, ‘abcdefu’ by GAYLE, and I’ve had it on repeat ever since (along with ‘Humble Quest’ by Maren Morris).

After the cover, they cleared the stage and set it up for the Nicolle Galyon and Kelsea Ballerini interview. They are both just such cool people and have achieved some incredible things; it was very inspiring. Nicolle asked some really interesting questions and Kelsea shared a lot of fascinating, inspiring, and encouraging stories and advice. And then they played a couple of songs that they’ve written together – ‘i quit drinking’ and ‘half of my hometown’ – as well as telling the stories behind the writing of them. It was a really, really cool experience and I feel very lucky to have been there.

The second round was made up of Emily Brooke, Caroline Watkins, Lauren Hungate, Madeline Merlo, Peyton Porter and, again, Mia Morris on percussion. I particularly liked Emily Brooke; I’ve seen her before and I really like her music. And they all told great stories about what inspired the songs.

It was an amazing show and experience and it was a great reintroduction to Nashville. I also got to reconnect with the people I know at Song Suffragettes (and those who I’ve spoken to online but not met) and that was really, really nice. I was kind of scared that, after three years away, the previous years of building relationships might have ended up meaning nothing but that completely wasn’t the case and I’m really grateful for that.

TIN PAN SOUTH

As I said, Tin Pan South is the big reason for coming to Nashville and I had some amazing shows on my list. There were some very tough choices too, great rounds that I struggled to choose between. But I think I made the right choices, for me, for this trip.

I could write about every single show in a ridiculous amount of detail but then we’d be here forever. So here are my highlights of the week…

  • Caylee Hammack – I first saw Caylee years ago and she was so good that I became a fan on the spot. She’s fantastic, both as a singer and a songwriter; I loved her songs then, I loved her album, and I loved the songs that she played during the round. And she’s hilarious. She’s also absolutely lovely: we spoke before and after the show and she was just such a sweetheart.

  • Nicolle Galyon – One of the rounds I went to was the Songs and Daughters round, made up of writers from Nicolle Galyon’s female focussed label, Songs and Daughters. Nicolle was fantastic (although I wish she’d played ‘We Were Us’ but then she does have a huge list of amazing songs to choose from) and even though, I’m kind of in awe of her, I did have a short conversation with her after the round and she was really lovely.
  • Madison Kozak – Madison was on the same round as Nicolle Galyon. I first saw her years ago and fell in love with her and her song ‘First Last Name.’ She did play that one, which made me very happy, and I loved every other song she played on the round; I can’t wait for her to release them.

  • Emily Shackelton – I’ve been a fan of Emily Shackelton for years so I was very keen to see her live again. I love her songs and she’s got a gorgeous voice; I’m so excited for her to release new music soon. I got to speak to her briefly after the show, which was really nice. I hadn’t gotten into the groove of talking to new people again (remember, COVID aside, I’ve just come off three months plus of being home alone while I tried the ADHD meds) so I felt kind of awkward and like I’d forgotten how to do the whole social thing but she was kind and generous with her time and I really appreciated that.

  • Kalie Shorr – The whole round made me laugh harder than I ever have at a Tin Pan South show and Kalie was just hilarious. I loved every song that she played and I loved the stories she told about them so that even the songs I already knew felt different because of the new insight. She’s a brilliant writer: she’s funny, smart, and empathetic, which makes for some really unique and just beautiful songs. I first met her in 2016 and we’ve talked on and off over the years but it’s usually through social media since we’re on different continents so it was really nice to connect and have a real conversation face to face.

  • Natalie Hemby – Natalie is one of my favourite Nashville people. She’s one of my songwriting heroes, she’s a wonderful person, she’s hilarious, and she doesn’t take shit from anyone. She was on her last song, I think, after a stunning round when she gave me a shout out in front of the whole audience and all of the ridiculously amazing and deeply respected songwriters on stage. She introduced me and said some really lovely things, which was just so sweet of her. (She actually invited me to sing too but my Autism brain short circuited due to the sudden change of plans and I couldn’t do it. I don’t think I could’ve told you the lyrics to literally any song at the moment, including songs I have personally written, let alone the song she was playing at that moment. I’m trying not to kick myself for it – it’s just how my brain is.) We got to catch up afterwards, which was really lovely. She really is the sweetest.

  • Notable mentions to both Jeffrey Steele and Chris DeStefano – Both of these guys put in amazing performances that I couldn’t not mention them. It’s funny because they’re so different from each other but they are both such compelling performers, performing very different but incredible songs.

AUTISM AWARENESS WEEK / DAY

It was World Autism Awareness/Acceptance Week and World Autism Awareness Day while I was away and, knowing that I’d be busy in Nashville, I’d prepared a series of posts to put up on my blog. I also posted this on Instagram:

OTHER FUN THINGS

While I didn’t do a whole lot more than go to shows, I did do a few things that are specific and special to Nashville…

  • SEEING FRIENDS – Over the years, I’ve made a handful of friends in Nashville and I’m still nurturing new relationships. I didn’t get to see everyone that I would’ve liked to but I did get to see some of my songwriter friends, some of my friends at NSAI, and some of my friends at Song Suffragettes. With three years since my last visit, it was really, really lovely to reconnect with all of these people and hopefully I’ll get to see the others next time or via technology in the mean time.
  • PANCAKE PANTRY – Chocolate Sin from Pancake Pantry is one of my favourite things to eat so I was very excited to finally get back to Pancake Pantry after so long. It was even better than I remembered and I had to remind myself to eat slowly enough that I could breathe. It’s not often that I enjoy food that much so it’s nice to experience that, something which I assume other people experience more often.

  • THE CANDLE BAR – I love my candles from the Candle Bar and I’ve managed to stretch my last one over three years by being very stingy about using it so I was very excited to get a new one. But then we got there and that particular fragrance wasn’t on the shelf. I was in the middle of feeling overwhelmed by what I should choose instead – none of them were really grabbing me the way my favourite does – when my Mum asked about it and they said they’d be putting it back on the shelves the next week but could pull it out for us since they had it ready to go. That honestly made my day. The pink pepper grapefruit candle is the only candle that I’ve ever really loved and since Mum loves it too, we made two to take home with us. I’m very excited to be able to burn them a little more liberally again. The woman who ran the session was lovely and full of fun information about candles and the candle making process and I just had such a good afternoon.

  • COMMODORE GRILLE – It was on my first adventure in Nashville that I discovered the Commodore Grille’s excellent chocolate brownies and it was on one of the few trips out to eat that we went out and got one. Well, one each. It was so good and I’m so glad we were able to find the time to do it.

SONG SUFFRAGETTES

I did manage to get in a second Song Suffragettes show while I was in town, which I was very grateful for. This round was made up of Jillian Dawn, Sam Bowlds, Olivia Faye, Elana Jane, Paige King Johnson, and Mia Morris, Mia being the only one I knew previously. They were all great – they always are – but I think my favourites were Jillian Dawn and Paige King Johnson; their songs just spoke to me more deeply than the others did for some reason.

On the whole, the travel had been good. I had disabled assistance at all of the airports and until the trip home, that was great and had made the whole flying ordeal a lot easier. But on the return trip, everything kind of went to hell and it was a bit reminiscent of ‘a series of unfortunate events.’ I almost had a meltdown on the flight from Nashville to Dallas because of a mix up with the seats, which was horrible.

And while the Dallas to London flight was okay (I mean, it was long and cold and uncomfortable but nothing went wrong), everything went wrong from the moment we landed, from problems with gates to confusion with the disability assistance to the freaking coach home. And by that time, we were both so tired (and I was so overwhelmed and stressed out) that I was definitely moments from bursting into tears. But we did eventually – eventually – get home.

It’s been about a week since I got home now and I’ve been a bit of a mess. The jet lag hit me hard, on top of my exhaustion from the trip itself, and my mental health hasn’t been great. I guess I’m just feeling really overwhelmed, like all of my feelings have been turned up to eleven (I mean, even more so than usual).

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About Me

Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, ADHD, OCD, CPTSD, depression, and anxiety, as well as other health issues including hEDS and  POTS.

I’m an alt-pop singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) and my most recent EP, Too Much And Not Enough, Vol. 1, is available on all music platforms and is the first in the series of works based on my experiences as an autistic person.

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