Preparing for London Film And Comic Con As A Disabled Person

So, earlier this year, I finally felt able to go to Comic Con for the first time ever after several failed attempts (this was mostly due to my own anxiety, which was then compounded by COVID and COVID anxiety). And it was amazing! I had a really, really special experience. Having spoken to them a lot, I was about as prepared as I could be (given that I’d never been before) and that really helped me enjoy the experience so I thought I’d share what I did beforehand and what I learned from the experience that will make it easier next time, whenever I choose to go. With London’s Winter Comic Con coming up, I hope that these can be useful to anyone wanting to go.


Apply for an Extra Help wristband ahead of time – The Extra Help wristband makes you quickly identifiable to the staff at the event so that they know to give you priority and move you to the front of the queues for your photo and autograph, etc. There’s an extra queue just for these wristbands at the talks and reserved guaranteed seating (although it is still first come first served). There’s a specific help desk for the Extra Help wristbands too and all of the staff were lovely and super patient even when I’m sure I was asking really obvious questions. These wristbands do require certain paperwork to get ahold of but all of that information is here.

Apply for Carers wristband – Even if you don’t need literal ‘caring for,’ having someone there to support you with whatever your particular needs are (for example, I needed someone – in this case, my Mum – there to help me keep my anxiety down, to guide me somewhere quiet if I started to get overwhelmed, and to be someone who knows what to do should I have a meltdown or should something unexpected happen) so that you can focus on the experience rather than worrying about what could go wrong and what you’d do if any number of things happened can completely change the experience. A pass doesn’t allow the carer to get photos or autographs but they can join their person in the talks and so on. (I met some members of a group of friends, some abled and some disabled, who’d organised their ticket buying to allow all of them to go for slightly less money, although that only works if members of the group aren’t interested in meeting anyone and only want to look at the stalls and go to talks with the group member they’ve partnered up with.)

Diamond passes are a good investment for seeing someone that means a lot to you – Because the only person I really, really wanted to see there was Amanda Tapping, I bought a Diamond pass because it made access to all of the Amanda-related parts of the event really easy and straightforward. The pass gave me access to the talk, the autograph, and photo, combining and reducing the price. It also improved the accessibility in that it reduced the queuing times and guaranteeing a seat. It made the whole experience less stressful, although I wouldn’t have been able to afford the luxury for more than one person.

Email beforehand if you have questions – Because I was so nervous, I emailed the organisers several times before the event to get as much information as possible. The staff were great, replying clearly and in good time. Having said that, it’s worth remembering that information does change so it’s probably best, should you need to contact them about anything going on during the actual convention, to contact them closer to the event if possible (although they obviously have to set up and so don’t reply to emails in the last few days leading up it).

The line up changes multiple times – The fact that the schedule changes so much has caused me a lot of anxiety in the past, during previous attempts to go, but now that I know that that is what happens, it doesn’t phase me as much. Knowing that the early ones are really only a basic guide and that you’re not going to be sure until the day before, or even the day of, did reduce my anxiety because I stopped panicking every time they changed it.

There are chairs but you have to search for them – I had fully expected to have to sit on the ground between my events (and at times, I did) but there were a handful of empty tables and chairs here and there around the convention space (I assume for events on different days or something like that). So, on the whole, it was a pretty comfortable experience; I could’ve coped with sitting on the floor but it was very nice not to have to. So keep an eye out because chances are, you’ll find somewhere more comfortable to sit than on the ground.

Keep the map on your phone – It’s a huge, huge space with a lot going on and it’s easy to get turned around so keeping the online map (or a picture of the map – I didn’t want to rely on the assumption that the WiFi would be good) does make it easier to navigate that space and to find things more quickly, something that’s especially helpful if you need to find a bathroom or quiet corner as quickly as possible.


An unexpected and beautiful aspect of my Comic Con experience was how many disabled people I saw and, of course, those were just the people with visible disabilities; there were surely many people there with invisible disabilities, just like me. That was so comforting. I’d been so worried about how my disabilities would affect my experience but here were all of these people with disabilities who were, presumably, having a great time. It helped to reassure me that that was possible, not just for that event but for ones in the future. There were also lots of service dogs around – one of which I spent quite a lot of time with – and that gave me a little bit more confidence about what it will be like to have one myself. I just felt very safe and welcome there (even though I’d never been there before), which is not something I often feel out in the world. So it was a really positive experience, on so many different levels.

And although I don’t know whether anyone who’s part of the organisation will actually see this, I still want to say thank you to all of the staff who were so helpful and accommodating and patient – especially when my anxiety rose and I was less able to function – because it made the experience so much better and so special: I was allowed to be myself, to be anxious, to need help. They didn’t for a single moment make me feel weird or stupid for struggling and I appreciated that more than I can possibly express since that is often the world’s default. My Mum and I emailed to express our thanks but I also want to acknowledge them publicly because I really, really appreciated it.

Here is my Instagram post from after the event…

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

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)

Another Autistic Summer

Summer as an autistic person can be really difficult. There are a lot of changes and some of them can feel quite extreme, quite overwhelming: the heat, the humidity, the general increase of people out and about… It can feel like a lot to deal with. I don’t pretend to know everything – not by any means – but I thought I’d share some of my thoughts and strategies for dealing with some of the big summer stresses…


SENSORY ISSUES

  1. Too bright – While bright skies are a sensory issue year-round, the summer months are hard in their own way: the light feels like it has a different intensity, it reflects back at me differently, it’s a different colour, it’s present for more hours of the day… It’s hard work on my eyes. I like working in my living room because it has white curtains, allowing for some light but without the glare (although anti-glare glasses are a good option to explore if you’re struggling inside). Outside, sunglasses are the obvious protective measure, but polarised sunglasses are better if you can get them.
  2. Too noisy – I find noisy environments very stressful and my anxiety only increases the longer I am in that noisy environment. The sensory overload is just too much and I become less and less able to function. And with more people around in the summer, the noisier it tends to be and therefore, the more stressed out I can get. I’ve found that the most effective coping mechanism is noise-cancelling headphones but playing music or audiobooks/podcasts through headphones and earplugs (if you find them helpful, you can have ones specially made – relatively inexpensively – to fit your ears, making them more effective) also work.
  3. Too hot – I’ve always found the heat of the summer very difficult and have been using open windows, fans, damp flannels and so on for years. But over the years, I’ve found the noise that regular fans make more and more anxiety-provoking so I finally invested in a Dyson silent fan. It was expensive (note: they are less expensive outside the summer months) but it was one of the best investments I ever made in managing my day to day health; it’s the most effective fan I’ve ever had and I use it year round. It’s more than made up for the expense. It’s also important to remember to drink as much water as you can – this is especially important for those with hEDS as well as dehydration makes the symptoms worse. Carrying a water bottle with you, having an app that reminds you to drink regularly, and so on can help you to remember and help you to build it into your routine.
  4. Different clothes – Following on from problems with heat, that often demands an entirely different wardrobe, which can be a less than comfortable change, literally and figuratively. It can involve different, uncomfortable fabrics or less fabric altogether, which can result in chafing or just feeling really exposed when people look at you. Finding specific fabrics – like cotton or linen – that aren’t irritating can be helpful. Layering, so that you can stay covered up as much as you need to to be comfortable, with thin fabrics can allow you to balance the need to keep cool and the need to be covered. And if you find a piece of clothing that really works for you, I recommend getting several to avoid the repeated stress of trying to find comfortable clothes.
  5. Crowds – As we know, in the summer, there are more people out and about and the world just feels more crowded. Public places are busier and that can be really stressful. Especially with the anxiety around COVID-19, crowds and crowded places can feel overwhelming which can cause anxiety attacks or meltdowns. The obvious advice is to avoid busy places at peak times but we all know that that’s not always possible. We all have our own strategies for managing anxiety but the ones I find most helpful in this situation are having someone I trust with me, giving myself plenty of time so that I don’t have that additional pressure, and I’ve also found the sunflower lanyard useful in certain places.

CHANGES IN ROUTINE

  1. Day to day changes – For some of us, our routines change regularly with the seasons but that doesn’t make it any less stressful. As someone who finds change very stressful, I try to make these changes slowly so that I have time to adjust and don’t end up feeling overwhelmed. It requires planning but it can really reduce anxiety.
  2. Loss of structure – While this isn’t, of course, applicable to everyone, the summer is often when people have time off from their usual occupation or go away on holiday. And with these things, we often find ourselves without structure. A lack of externally imposed structure can lead to a lot of aimlessness and/or anxiety so learning to build our own structures is a good skill; you don’t have to fill your schedule from opening your eyes in the morning to closing them at night but giving yourself things to do and think about (beyond their inherent value) keeps you moving and feeling and living. I do struggle with this but I’ve found it really helpful to have my family prompt me when I get stuck in a rut.
  3. Seeing less of some people and more of others – As I talked about in my BPD Awareness Month post, I get very anxious about my relationships and fearful that I’ll mess them up or that my issues will be too much for people. So a big change in my routine of seeing friends makes me very anxious. Living with such limited energy, socialising is something I find stressful because it requires so much energy, even though I enjoy that actual spending time with people. I’m lucky that my good friends are really lovely and really understanding but I still worry. I haven’t really figured out a good way of dealing with this anxiety but I do try to be as honest as I can with my friends and family so at least we all always know what the situation is.

ANXIETY

  1. Trying to do too much – When I have free time, I often end up struggling with a lot of anxiety, usually about whether or not I’m using the time in the best way (partly due to the fear that if I say no to too many things, people will think I don’t care and eventually want nothing to do with me). This can result in trying to do too much, more than my health – my sensory issues, my energy levels, and so on – really allow me to, which can lead to meltdowns or feelings of burn out. Over the years, I have gotten better at judging what I can and can’t manage and what’s really important to me but I still find it difficult and stressful and sometimes upsetting. I think it comes down to practice and self-compassion but that’s easier said than done. (I know that I also have issues about being as productive as possible but I also have a lot of anxiety about time running out in general, in multiple aspects of my life, which means I often end up pushing myself too hard. But I can’t say I know what to do about those issues at this moment in time.)
  2. The stress of holidays – While there are fun things about holidays and travelling, there are a lot of really stressful aspects, from the actual travel like flying to all the new-ness to being cut off from all of the normal coping mechanisms. There’s also a weird expectation to have fun on holiday that can create added pressure. Personally, I’ve found that the absolute best thing I can do in these situations is just talk to whoever I’m with and try to be realistic about what I can manage, although it’s still a learning curve. It doesn’t always feel like enough but I’m still learning to adjust my expectations to fit with my physical ability; I struggle with feeling guilty about ‘wasting opportunities’ too but, as I said, learning to let that go is a process and requires practice and self-compassion.
  3. Anxiety around what comes next – This is the first year where I haven’t been in education (or had education on the very near horizon) so I can only really speak to the experience of being in education and how it can, at times, feel like an endless hamster wheel. Every year, there’s the freedom of the summer holidays but there’s anxiety too. I always had this anxiety in the back of my mind about what the next year would bring, having finally gotten comfortable in the patterns of the year just gone. After all this time and all these years, the new academic year still stressed me out to an almost unbearable level so I don’t really know how we, as (disabled/neurodivergent/struggling) students, are supposed to manage that stress. I think a big part of it is on the schools and how they handle the roll out of the new year and talking to the school about it can help but, personally, I haven’t had much experience with that making things better. But I have to hope that they will eventually improve.

I know it’s been a while since my last post. A lot has happened and I’ve been having a really, really hard time. Some of that is stuff that I would like to write about at some point but I still feel like I’m stuck in the middle of it. Plus, I’ve been really struggling to write – with even being able to string a sentence together – which hasn’t been helping anything. Things still aren’t great – which may be the biggest understatement of my life – but I miss writing and I miss writing for this blog so I’m trying to push through. I wrote most of this a while ago and, given how hot it’s been recently, I wanted to get it up while it might still be helpful. I hope it is.