The Story of Summer 2022

This year I returned to experiencing outdoor festivals (thank god!)

Alt text: A black & white ‘selfie’ of a lady with long hair, wearing a baseball cap backwards, a face mask & a spotty halter neck top on a viewing platform.  Her eyes are wide.  Behind her a crowd of people are watching a large stage bathed in lights & smoke.

The photograph shows me on the viewing platform (area for disabled people & their families, etc, to watch shows in comfort & safety, if they choose) in one of the tents at All Points East Festival.  ‘Squarepusher’ is playing.  I look as if I’ve been partying hard but in reality, I’m stone cold sober.  I’m just deliriously happy to be at ‘dance day’ of All Points East.  ‘Squarepusher’ was awesome & played the best set of the day.

This summer I returned to outdoor festivals.  To gently ease myself in, I chose festivals that were either a short drive or train ride away.  I also opted not to do any overnight stays.  I chose BST’s (British Summer Time) Elton John in Hyde Park, Ealing Blues Festival, Primadonna, All Points East & Notting Hill Carnival. 

I also packed plenty of PPE – gloves, masks, alcohol wipes & hand sanitiser.  I drank plenty of water & cranberry juice (such a nice cranberry juice drink at All Points East!)  I wore Factor 30 or Factor 50 suncream, but in general, I stayed out of the sun.  I wore my baseball cap.  It was an exceptionally hot festival season & my lungs don’t cope well when the temperature goes over 30 degrees centigrade.

In general, I’m terrible at pacing myself, but I had to this time around due to my Zometa infusion (to protect my bones) as well as my monthly Zoladex injection being due in July.  The combination of these treatments always wipes me out for two weeks plus.

Elton John, BST, Hyde Park

Alt text: a coloured ‘selfie’ of a white woman with long blonde / brown straightened hair, wearing pink / brown rimmed round glasses, a back hoodie, a gold & black necklace, another thin gold chain & a black halter neck top with white dots on it.  She is on a viewing platform at an outdoor festival.  She is smiling.  Behind her is a large outdoor stage, crash barriers & a few fans gathered at the front of the stage.  It’s a cloudy day.

The photograph shows me on the viewing platform at the main stage in Hyde Park.  It’s shortly after I arrived so that’s why I’m smiling so much.  Behind me the main stage is being prepped for the opening act of the afternoon.

But despite this meticulous planning, on the night before the Elton John gig, I had a huge panic attack.  It was all over COVID.  I was suddenly filled with self-doubt – should I be even going to a huge, crowded festival site, how would I be able to keep myself clean, what if I can’t cope?  My boyfriend very calmly reassured me & said that if I felt anxious, we could come home immediately.  However, he also said that I’d be disappointed if I didn’t at least try.  And he was absolutely right.

Just like I love gigs, I love festivals too.  Going to festivals is normally what I do for the majority of the summer & now I had the opportunity to return after my period of enforced isolation.  So, I cried a bit more to get the fear out of my system & then went to bed early so I could rest up before ‘The Big Return.’

I’m so lucky to have a boyfriend who totally ‘gets me’ & understands the situation that I’m in.  He’s been gently reassuring & encouraging me to return to the things that I love doing because he knows how miserable I’d be without them. 

As soon as I entered the festival site & I wheeled onto the large viewing platform (the main stage one at Hyde Park is one of the biggest in the UK; there is a fantastic view of the stage & across the site), I felt ok.  All my worries disappeared & to be honest, it felt like I’d never been away from a festival site. 

The BST is a huge site, so I just stayed on the main stage viewing platform for the majority of day.  Usually I’d be frantically wheeling up & down the festival site, tent-hopping to see my favourite artists but just driving to & from the festival (having said this, Hyde Park is only about twenty minutes’ drive from my flat), as well as entering & leaving the site was enough for me on that particular day.  The viewing platform also has a bank of clean, flushing accessible toilets which I need to be near to these days, LOL! 

Whilst enjoying the music, I was able to catch up with a few colleagues in the events sector that I’d missed, which was lovely.  In the guest area, I got talking with another customer who’d also been treated for cancer over the pandemic.  We bonded over how scared we were about returning to festivals & festivals portaloos in particular, but ultimately, we agreed that we needed to restart our lives once again.  I know this conversation will become one of the most important ones that I’ll ever have with a random stranger.

I’d never seen Elton John before.  What a mega star!  He played effortlessly & I loved his gentle interaction with the audience.  He was completely different to what I imagined him to be.  He was humble, appreciative & came across very genuine.  Much like when I saw Barry Manilow play in Hyde Park for the BBC’s Proms in the Park, I was amazed at the musicianship.   

Not only was Elton John great, but he put on some really talented artists that he’d chosen especially for his show.  I love that he’s so supportive of new music.

After the Elton John day, I had a couple of weeks off to receive intense treatment, returning to festival going towards the end of July. 

Ealing Blues Festival, Walpole Park, West London

Alt text: A coloured ‘selfie’ of a white woman with freckles & long blond / brown curly hair, wearing sunglasses on her head, a silver chain, a long silver necklace with large links & a pink top. She is smiling.  Behind her are trees, a dusty parkland & blurred images of other people.

The photograph shows me onsite at Ealing Blues Festival, looking really relaxed on a lovely Sunday afternoon.

One local festival that I rarely miss is Ealing Blues Festival & I often go to the Jazz Festival too.  They often coincide with my boyfriend’s birthday celebrations.  In fact, we had a glorious party over the Blues Festival four years ago for his 60th.  It’s also the first time that I’d attended a festival with my dad!

For a number of years, Ealing Council has supported a series of festivals based in Walpole Park, most of which are subsidised for the local community.  Alongside the Blues & Jazz Festivals, there’s also a Comedy Festival.

Ealing Festival also has its roots in the Ealing Blues Club, its most famed artists being the Rolling Stones, & it’s been awarded a ‘Blue Plaque’ to commemorate the beginning of British Rhythm & Blues.

I’m intending on taking the bus to the festival & back in future years as an attempt to live my life more sustainably, but Walpole Park is just a twenty-minute drive from my home & I can park on the street right outside the park’s entrance.  You can also take your own food, drink, picnic blankets & chairs which is so handy if you’re ‘festival-ing’ on a budget.  It’s so easy to load up the car & head off.   

I had another important reason to go to Ealing Blues Festival this year – Canvey Island’s own Wilco Johnson was playing & I’ve never seen him before.  I think Wilco is amazing!  A few years ago, he was told that he had incurable cancer, so he went on a final farewell tour for his fans.  He had his treatment & it was so successful that he became NED (No Evidence of Disease).  So now he’s back out on continuous tour & making the best of his life.  When I was onsite, I made him a little film to say that I’d come to support him, then I tweeted him & he clicked the ‘like’ button.  I was so chuffed!

In reality, Ealing Blues Festival was quite tough going for me.  I was still in pain after the infusion & then I got an infection.  It was ridiculously hot too which made the site extremely dusty & this just added to my nausea & general discomfort.  Luckily the site has plenty of trees where you can shelter from the sun & I was drinking plenty of water.  St John’s ambulance also assisted me that day because I’d forgotten my paracetamol & they provided me with some.  Such lovely people!

I had tickets for both days of the festival.  To manage my energy, I left at 5pm on the first day.  I wanted to save the rest to see Wilco who was headlining on the second day.  The only time that I’d previously left a festival early was my last camping festival about 20 years ago.  It was freezing in my tent & my bones couldn’t take it anymore.  I packed up my stuff & found a taxi that would take me the hour & a half drive back to my London flat.  It wasn’t that expensive either!

Anyway, back to Ealing Blues Festival.  We were joined by more of our lovely friends the next day to see Wilco Johnson.  A couple of my friends had experienced their own serious health challenges during the pandemic, so we were really glad to be with each other again.

And Wilco Johnson was fabulous, strutting back & forth & up & down the stage in his trademark way.  He seemed genuinely chuffed that many people had come to watch him.

Primadonna, The Food Museum, Stowmarket, Suffolk

Alt text: A photo of a white woman with long blond/brown hair in a wheelchair sitting with her arms outstretched to the side.  She is sitting in a tree-lined festival field in front of huge, multi-coloured letters that spell out ‘Primadonna.’  She is wearing a blue denim jacket, a white top, blue trousers, black trainers & pink/brown rimmed glasses.  She is smiling.

This photograph was taken shortly after I arrived at the Primadonna Festival site.  My smile reveals how happy I was to finally get there.  I love the huge multi-coloured letters & the festival’s branding in general.  It’s so jolly!

The following weekend I did my only ‘out of town’ festival for the season – Primadonna Festival. (I’d also researched getting to Nozstock & 2000 Trees Festivals by rail & taxi/accessible bus & staying in accessible accommodation nearby, but it was impossible to do). 

Primadonna is a boutique festival that I’d been wanting to try out for a couple of years.  It’s a literature & music festival, based at The Food Museum in Stowmarket, Suffolk.  The audience-base is predominately women.  The Founders of the festival, ‘The Primadonnas’ include Sandy Toksvig, Catherine Mayer & Kit De Waal.

I wasn’t able to book any wheelchair accessible accommodation in the local area, so I bought a day ticket for the Saturday, leaving early from Liverpool Street Station to reach Stowmarket at lunchtime. And then a rail strike was announced!  I’m not complaining because I support the unions & workers’ rights, but it did mean re-organising my passenger assist & return train tickets for the Friday instead.  I was only able to experience the festival for four hours because it started part way through the afternoon, but that was my choice because I could have attended on Sunday instead.  I didn’t because I thought travelling by train would still be complicated after the strike.

Primadonna Festival site is set in beautiful countryside just a 10-minute push from Stowmarket train station, through the town centre, to the Food Museum.  Despite being there for just the afternoon, the experience was transformative.  As soon as I entered the site, I experienced something that I’ve never had on a festival site before – peace. The museum grounds are gorgeous & we were totally spoilt by the sunny weather. 

I worked out why I was at ease onsite – there were no surly men, barking their orders, radios blaring, swaggering about, tripping over the huge egos of one another – I could go on, but you get my drift!  It was so refreshing.

The atmosphere onsite was calm, positive & supportive.  It seemed that people cared about your wellbeing & went out of their way to ensure that you had everything you needed to just ‘be’ at Primadonna.

I met up with some old friends as well as meeting new people; including interesting people who made podcasts, who wrote, made new outfits from recycled clothes & wood sculptors.  I listened to a talk about the Witchfinder General & that terrifying era for those who were accused of being witches, but who were entirely innocent (Manningtree, the home of the Witchfinder, is located just across the Suffolk border, in Essex).  I listened to a debate between two established writers about their writing processes & their early careers.  I did a lot of shopping, including a necklace shaped into the word ‘Difficult’ from Perspex (according to the makers, ‘Wear & Resist’, that was the most-bought necklace by festivalgoers that weekend & if that doesn’t say that we live in a misogynistic world then I don’t know what does!)  I watched a female musician play an acoustic set whilst her little daughter danced enthusiastically at the front of the stage with her young friends.

The slogan of Primadonna Festival is that you’re there to experience ‘the world as it should be.’  Festivals don’t have to be banging music, frenetic rushing from stage to stage, large crowds to negotiate; they can be gentle places, relaxed approaches, spaces to breathe in & at which you can take stock.

I’ll definitely be returning to Primadonna next year.  I’ve worked out that I can stay in accessible accommodation in Ipswich & then travel between there & Stowmarket every day.  It’s a really cheap journey.  I’m just waiting for ‘The Primadonnas’ to release the tickets…

All Points East, Victoria Park, East London

Alt text: A ‘selfie’ of a white woman with blond/brown hair on a festival site.  She is wearing a black baseball cap with a pair of sunglasses perched on top of it.  She is wearing pink/brown rimmed glasses, a black V-neck top with silver threads running through it, a leopard-skin print bracelet with fake stones & a Perspex necklace that spells out the word ‘Difficult.’ Behind her stand a few people, waiting for the DJ to come onstage, the stage itself & large banks of speakers, including one which forms an arch above her.

This photograph was taken at one of the All Points East days.  I’m at the 6 Music stage, waiting for Afrodeutsche to come on – she didn’t disappoint! 

I went to two days of All Points East, but they weren’t consecutive days which made it much easier to manage my energy levels.  I drove to the festival & back, the journey is about an hour & a half each way from my flat.  It didn’t seem to make much difference that one day when there was a rail strike.

The days that I attended were two very different days – one dance (the headliners were The Chemical Brothers) & the other a calmer day (the headliners were The National).  Both days were equally enjoyable.  On the first day, I had enough energy to explore all of the festival site & I went to watch artists at a few of the other stages.  I’m really glad that I experienced all of Squarepusher’s set; he was awesome.  I got a bit frustrated with myself as I had to keep resting between my bursts of frenzied dancing!  I have to practice dancing for longer periods.  I don’t want the pain from the cancer treatment to take away that joy as well.  I can’t let it suck up all the joys of life! 

All Points East is one of the festivals that programme a lot more female, non-binary and trans artists (which frankly is how it should be) & I was really pleased to be able to experience Mary-Anne Hobb’s All Queens line-up at the 6 Music stage.  One of the areas where female artists are under-represented in a major way, is electronic music.  I listen to her 6 Music show pretty much every weekday, so it was great to see the artists that she champions, in the flesh. 

The Chemical Brothers’ Day was on a Saturday, so everyone was up for a party which was really good to be part of.  But by the end of the afternoon, I had to retire to the main stage Viewing Platform for a rest & to get some shade under the trees.  It meant that I missed Kraftwerk on the other stage, but I honestly didn’t have the willpower to push my way back through the crowds from one viewing platform to the other.  I wasn’t too upset, I’ve seen Kraftwerk before.  Having said that, I’ve lost count of the number of times that I’ve seen The Chemical Brothers.  I always go & see them play at festivals & when they’re touring.  They’re one of my all-time top electronic acts & I love how their visuals have developed over the years.  I was with my good friend Mandi who is an awesome VJ -artist (playing under the name of ‘Mouse on the Telly’) & she goes to watch them for the same reason.  During the set, she was explaining to me how some of the effects were created, which I found fascinating.

The National’s Day was altogether a more relaxed affair.  Most of the artists that I wanted to see were on the main stage, so I settled myself in for a gentle day on the viewing platform.  Again, I could have crossed the site to experience Public Service Broadcasting & Fleet Foxes, but I wasn’t feeling too great that day, so I decided to take it easy on myself.

I loved Mogwai’s set.  What a great band they are.  I love the way that band member Stuart says “thank you” or “thank you so much” after every song, as if he’s surprised that people turned up to watch them.  Mogwai played instead of Low & I want to take time to wish Low’s Mimi well as she is undergoing cancer treatment & was too ill to play.  Damn bloody cancer.

The National were epic but what made it really special was an Autistic girl sitting on the platform with me.  She absolutely adored The National & sang her heart out to every song & she was just so excited to see them.  That honestly made my festival day & everyone on the platform fell in love with her.

And then when we left the site, many people in the crowd were singing.  It was so nice to experience that.  The perfect end.

Notting Hill Carnival, Ladbroke Grove, West London

Alt text: A ‘selfie’ of a white man & woman in the middle of a crowd.  The man is wearing a pink paisley trilby hat, a blue flowered shirt & rectangular glasses.  The woman is sitting in an electric wheelchair.  She has brown hair, which is tied back, but some strands cover her face because it is windy.  She wears pink/brown rimmed glasses, a turquoise halter-neck top, a gold chain & small silver hoop earrings.  She is cheering.  Behind them, a diversity of people in ethnicity & age gathers.

This photograph was taken at Notting Hill Carnival, at the top of Barlby Road where my boyfriend & I stand most years to watch our local carnival, which happens to be the biggest one in Europe.  Although you can’t tell from the photo, we’re right at the front & we’re squashed in by people either side of us.

My festival-going usually ends with a day at Notting Hill Carnival, but I was lucky enough to go to two consecutive days this year (I hadn’t been to Kids’ Day for years).  I’m going to attempt to explain Carnival, but in reality, I can’t because you need to experience it for yourself, even if that’s just once.

I’ve lived in the Ladbroke Grove area for 20 years now.  I’m just a few streets away from the main procession.  The performers & the lorries tend to get ready in the next street, so the sound of Carnival usually begins at 6am on each day & the police helicopter can be overhead until the early hours of the morning.  My road is usually the car park!  With Carnival dominating the area, you can either go away on holiday for a few days or join in the fun.  Just staying around for the festival, but not joining in, isn’t really an option because it’s all-consuming.  I feel bad if I don’t go to Carnival because the performers make so much effort with their amazing costumes & dance routines.

In years gone past, I’ve roamed around Carnival as best I could, but it’s became more difficult as I’ve got weaker.  Towards mid-afternoon, the crowds are huge & jammed packed into the roads & I can no longer cope with this.  For the past 15 or so years, I’ve taken my place at the top of Barlby Road where it meets Ladbroke Grove. It’s where the lorries sometimes turn in & there is always a large police presence, so I feel safe there.  I’m by no means the only disabled person at Carnival – we’re part of the crowd & part of the performance as well.  Everyone goes – elderly people, kids, babies, young people, old ravers like me & my boyfriend, lol.  My boyfriend isn’t a great lover of crowds, so we agree to stay in this spot until 5pm when the crowd tends to start surging in different directions.  Barlby Road is just a couple of streets from my flat, so it’s easy to get to & from it by walking / wheeling.

Carnival is loud, loud, loud & has a huge party vibe.  I absolutely love the Carnival tunes.  Of course, this is very physical experience for me, but the music tends to spur me on to keep dancing.

2022’s Carnival was mega-busy; hardly surprising because it wasn’t permitted to take place for the past two years due to the pandemic.  As my boyfriend & I arrived at our usual spot in Barlby Road, we were struck by how big the crowd already was.  Unfortunately, we got caught up in a crowd surge about 3.30/4pm but I managed to force my way out of it.  I never use my manual wheelchair at the event, I always take my electric chair which is very strong & big, & it creates a presence in the crowd.  I told my boyfriend to hold on tightly to the back of my chair & I powered through the people, quickly.  I tend to get a mixed reaction when I push through the crowd; obviously it’s unfortunate if anyone’s toes get run over (I never do this to kids or elderly people) & some people insist that I can’t get through.  Every year there’s one person who says, “you shouldn’t be here!” I don’t bother with ignorance as base as that.  A quick giving of ‘the bird’ usually suffices, although I don’t always do that because situations can be tense.  Other people actively move or get others to move, warning others that there are wheelchair users, kids or elderly people around them.

So, due to the crowd surge we lost our front row view, but a good friend of ours turned up to say hello, so we had a really nice time hanging out with her.

I didn’t feel in particular danger whilst the surge was taking place, but I could see that my boyfriend was scared.  One of the young stewards fell at my feet & I hauled her up, sharing a joke that it was her that was meant to be protecting me, but she wasn’t harmed, just a bit shaken.  I didn’t want anyone to fall on me though, especially where I’d had surgery, so I took the wise decision to step back from the front.

I also want to say that crowd surges happen anywhere & everywhere, & a crowd surge at Carnival is the same as ones that you could get at any large festival.  I got caught up in one when I left Hyde Park after the Elton John gig & we had to shout out to other members of the crowd to form a protective ring around me until another side entrance was quickly opened.

And finally

I’ve concluded that as long as I pace myself carefully & that I’ve meticulously planned ahead for each outdoor event, I can return to enjoying festivals.  I discovered that I prefer smaller festivals now because I can relax more & it’s easier to take time out if I need to.  Travelling by train & back to a festival is a really nice journey, especially if it’s with other festival goers. 

In years to come, I hope to be able to drive long distances in comfort once again & be able to return to festivals that are more remote.  But until then, these four festivals that I went to in 2022 will suffice for my festival experience.

I also want to thank my boyfriend Stephane for coming to the festivals with me because I couldn’t do it without him.  And anyway, a festival ain’t a festival without him by my side.

Published by The Musings of Spu

I'm an Essex girl who went West to find fame and fortune. 'The Musings of Spu' is the home of all my creative output, whether that be my writing or the 'stuff' I've made.

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