Posted on August 21, 2017
On Sunday 9th July 2017, I woke up feeling very nervous. It was the day of Disability Pride in Brighton, the first event of its kind in the UK, and I was performing on the main stage just after two o’clock. Of course, I was really excited: it was going to be a great event, one I was really proud to be a part of. But my anxiety was very high. Other than the fact that I hadn’t played live for a while (finishing my degree has taken up all of my time), I felt anxious about whether I deserved to be there.
My presentation of Autism isn’t very obvious. I’ve been told many times that I don’t ‘look Autistic’ (a phrase that needs a whole post to itself) and I’ve always struggled with where I fit under the label of ‘disabled’. The legal definition is “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” (according to the Equality Act 2010 if you want the source of that). So, yes, I am disabled but it’s very much an invisible disability and multiple experiences of that being questioned has made me very nervous of associating myself with the word. But I’d applied and been chosen to play so I tried to trust that.
Everyone was so nice, right from the moment I arrived. I met the stage manager, AJ, who was lovely and got ready to go on stage; I was starting to get back that excitement that I get from performing. But then my capo broke. For those of you not familiar with guitars, the capo is the little gadget you can put on the neck of the guitar to make it easier to play in different keys. It literally sprang apart in my hand. Not good. I needed it for every song (I usually have a spare but since I’d bought this one a week ago, I hadn’t worried about packing one). Half of my brain was desperately searching my repertoire for songs that didn’t need a capo and the other half was trying to figure out where on earth I could find another one. No one else seemed to have one so my parents (major shout out to them) ran off to the two guitar shops close by. I felt like I should be panicking but I was strangely calm.
Somehow a capo was found and then I was on. I’d originally had time for four songs but that had to be cut down because of the capo problems. But I didn’t mind. The atmosphere was so nice, so friendly, that I just wanted to get out there and play.
I’d agonized over what songs to play. I write a lot of songs about my experiences with mental health – it helps me process them, helps me make sense of it all – but I didn’t want to upset or trigger anyone. On the other hand, I wondered whether it was a good place to play them, somewhere where people might relate to them. In the end, I decided to play two of those songs with two more upbeat, positive ones. But with the stress of finding another capo, all coherent thinking disappeared from my brain and I was playing a song before I’d even decided to play it. Oh well. That first song was called ‘Bad Night’, about a particularly bad night where I couldn’t imagine how I would ever feel better. The second song I played was called ‘Invisible’, a really important song for me because it’s such an honest account of asking for help with my mental health and being repeatedly turned away. As I introduced it and told the story behind it, I could see people nodding and that actually made me well up a bit. Writing it was so hard that I hadn’t really thought about what kind of reaction it would get and so, to have people connect to it, connect to something that was so personal, it kind of blows my mind.
I’d hoped to play another song, to end my little set on a more upbeat note, but there wasn’t time. That was a shame but I was so happy to have played at all. All my anxiety had disappeared and I remembered exactly why I love performing so much. And I have never played to such a friendly, supportive crowd. It felt safe to sing those songs about difficult things and it felt safe to be exactly who I am. I hadn’t expected that and even though it’s now several weeks later, that feeling still almost brings me to tears. I don’t often feel safe outside my home but I did feel safe there.
It didn’t hit me until later but my favourite moment of the event (apart from the adorable little girl who stood right at the front, watched both my songs, and waved at me afterwards) was something someone in the audience called out between my songs. With all the stress beforehand, I hadn’t checked the height of the microphone stand and so I discovered during the first song that it wasn’t high enough. I made a joke about that as I adjusted it, about being too tall for the microphone, and someone from the audience called out, “the microphone’s too short for you!” It’s simple but it meant a lot to me. I often automatically put myself in the wrong, assume that I am too much or too little of something rather than looking at the situation for what it is. Here, it was simply a case of adjusting the microphone stand to match my height and it’s a little ridiculous to put all of that on myself, to let it reinforce a negative view of myself. I mean, it’s a microphone stand! But it shows how easy it is to get into a pattern of always seeing yourself as ‘wrong’, even when there isn’t a right or wrong.
Of course this isn’t always the case, but it was a good little reminder to be aware of my thought processes and be aware of what I’m telling myself. (I think it’s pretty easy to pick up that way of thinking when it comes to a disability or mental health problem, because you’re often different from the norm and you end up adjusting to fit into that. So it’s easy to feel ‘wrong’, simply because it’s not the same as everyone else. At least, I feel that way.) It’s often hard to remember that different isn’t wrong, especially when the way everyone else does things is praised as the ‘right’ way or the ‘best’ way. I regularly have to remind myself of that.
Anyway, I had a really great time at Disability Pride and I was so grateful to play. It really was one of the loveliest, most supportive crowds I’ve ever played for. I wish I could’ve stayed longer and explored more but my physical health hasn’t been great lately and even that little amount of time had completely exhausted me. But the little bit I got to see was incredible and I am so, so proud to have been part of the event, even in the smallest way. I really hope that this event can become an annual one. Thank you to everyone involved – you are all complete stars!
Posted on August 16, 2017
I posted about this on Instagram but I wanted to write something for here too.
On 5th August, it was the two-year anniversary of my Autism diagnosis and I decided that I wanted to celebrate it. It was already a really busy day with Brighton Pride and the birthday of one of my best friends but when I got home, I had cake with my family. Me and my Mum made a chocolate cake together and stuck a little sign on top that said ‘Happy Diagnosis Day!’
I’m not sure whether I’ll ever be able to celebrate actually being autistic – there are still so many things that I’m struggling with – but I did like celebrating this day because getting the diagnosis was a really big deal. I finally got some answers to the questions I’d been asking my entire life. For years, I’d struggled with this unknown thing, not understanding why I couldn’t seem to function as well as everyone else. It felt like I was broken. And getting the ASD diagnosis changed that. It explained things I hadn’t been able to understand and it gave me a place to start when looking for support. Suddenly this massive, intangible thing I was wrestling with started to make sense.
It’s not perfect and it’s not easy but this date represents an end to that chapter of my life and the beginning of a new one, hopefully a better one. And I think that’s worth celebrating.