I Want To Dance.

I’ve recently been to the On Blackheath festival. The line-up for OnBlackheath looked good; Frank Turner and The Sleeping Souls, Imelda May, Athlete, The Levellers and more.  I grew up in SE London and have fond memories of Blackheath so it was exciting to ‘come home’.

This festival is not like other music events I have been to. A Middle Class festival with no camping,  food demonstrations galore and sponsored by Johnnie Lou. Full of middle class, middle aged people, but no-one wearing flowers in their hair or peacock feathers. Except us. R with his festival hat (and those peacock feathers); Summer Girl with that flower garland on her hair; winter boy with a black ribbon-adorned hat. We did see Champagne bars and exclusive areas with fabulous seating and palm trees and no queues for drinks; but only if you were a Johnny Lou member.

For those ticket holders who were not privileged enough to quaff cocktails while laying back on recliners, the floor with a picnic blanket had to suffice. Or standing. Or fighting with other peasants for space on the Rare as Rocking Horse Shit picnic benches, sandwiched between 3 distinctly different, yet equal in noise level, music stages.

I’ll repeat that, in case it passed you by.

Sitting on the floor. No camping chairs allowed. Did they think more damage could be done by drunk Londoners with Go Camping chairs than by a crutch belonging to a pissed off disabled woman? ‘Where did they think people with mobility issues are going sit?

Or standing. Which is mostly what I actually did. I lent on my crutch, walked a bit, sat on a child’s bench watching entertainers do street theatre, but mostly, I stood. Until, during Massive Attack, a large, heavy, drunk man crashed full speed into me. Pain seared down my legs, fear rose, and anger and upset that had been bubbling away all day, along with two tired children, had me hobbling back to the hotel less than halfway through the set.

Surely Disabled Access Platforms are now commonplace at music events? Well, there was one at On Blackheath. It was empty, carefully monitored by two security guards. In case the crutch wielding disabled woman tried to get in. Access denied. We had no wristbands. We were sent on a wild goose chase around the festival site, seeking that person with the Golden Access Wristbands and after missing some excellent bands playing to trying and failing to find someone in the know, I gave up and we stood.

Sunday was different. Frank Turner and The Sleeping Souls were playing. How could it be anything but fabulous? I decided to not stress about disabled access and enjoy my day, so helped by handfuls of opiates and my crutch, we braced ourselves for the crowds. Unlike my Beautiful Days Festival experience, which was amazing for disabled access , and the only time I have tried it since I fucked my back up, I felt like I should not have come to this music event. For, it was not really a festival. I felt unwelcome as a person with a disability.

Then an amazing thing happened. I got a Golden Wristband. We were in! I camped there for the rest of the day, mostly drinking overpriced red wine (medicinal), and R took the children off to have some fun in between some amazing bands playing.

As I watched the security guards continued to send clearly disabled people away from the mostly empty platform to get their very own Golden Tickets, I felt more anger and upset well up. Why was this platform so difficult for people to access? I looked around the festival to see more disabled people among the crowds and wondered if they knew this platform was available to them? Or maybe they already knew what I didn’t.

I spent the afternoon enjoying great bands while trying to not get cross at the noise pollution from other areas that constantly overshadowed the music. It was strange listening to Lindy Hop from a dance floor while Athlete played, and The Levellers were drowned out by dance music. Frank Turner was amazing. I expected no less. He played loudly and swore loudly, but yet still didn’t fully drown out the Big Blue Top in the background. But, bloody hell can that man sing, can that band play?! The children danced for me.

The platform was far from the main stage crowd, we were ostracised and segregated, far from the jumping, singing, amazing atmosphere of the excited crowd. We watched in the distance. We were there, yet not really part of it all.

I was cross and in my anger fired emails to various people. I was given platitudes and had smoke blown up my ass by the On Blackheath events organiser, until I refused to accept her disingenuous offerings and she became rude. I emailed Frank Turner, as he is an advocate of Disabled Access to Music. He replied and was very kind.  And I was reminded of the amazing support for disabled access to music out there that is promoted by Attitude is Everything. 

But, really, it was me that I was most angry with. It was harder than I expected. I’ve buried myself in my little cocoon and pretended things are no different before but they are. They really fucking are. I was cross with myself for thinking it would be the same as it once would have been.

All I wanted to do was Dance to my favourite music, to be in the crowd, not on a platform. I wanted to be dancing with the children on my shoulders, or swing them around to Beautiful Day sung by Imelda May and Four Simple Words by Frank himself. Instead I felt alienated, yet again a burden, a reminder that this fucking problem isn’t going away. It meant I couldn’t enjoy the weekend as I would have once done. I won’t be able to do that again.

I promise though, that for every upset, I will match it with a happy tale on the flip side of shit.

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Still Here. Still Love Wine. The Sea. Music. Still Disabled.

I have been absent. I have been in a bad place. A roller coaster ride of attempting recovery from chronic back pain and sliding back into the darkness of chronic back pain. I am not going to talk about details now, although I will at some point.

But, I have had a particularly negative experience at a music festival, which happened as I attempted to live a life that is not really my own, while trying desperately to forget that despite surgery, and rehabilitation, and time, I am probably not going to ‘recover’ from this chronic back pain. As the enormity of how hard it is to do things that ‘normal’ people do hit me like a brick, I was right up close to the appalling discrimination of people with disabilities a way I have not been before. I now know that the reason for this lack of experience has been because I have shut myself away from the real world and not participated in it any more than has been essential to survive, because that world doesn’t really belong to me any more. Except, it does now. I am reclaiming it.

I am going to relive some of this experience with you in my next post, and I will share some of my future experiences as I come across disability discrimination on a daily basis, and yet also find amazing people who try to be our advocates. I will use my time blathering on to do my little bit to help make access, treatment and attitudes to people with disabilities better, nicer, kinder. So that it is not so hard, it’s not so embarrassing and it’s not so fucking difficult to do the things that we used to do. Like go to a music festival.

I am dedicating the future of this blog to my Chronic Back Pain Suffering Mumsnetters who have been my rock in the last couple of years, in the last year in particular. They have picked me up when I’ve been on the floor. They have cheered me up when I have been unhappy. They understand when no-one else does. They have shared their own experiences. They have held my hand when I have been unable to cope. with the relentlessness of this fucking chronic back pain.

They also love Frank Turner, internet shopping and Fly London boots.

For My Summer Girl. “HOME”.

My flat is my favourite place to be right now, shall I tell you why and how? I don’t have too much. ok, perhaps too much clutter. but material things, well they don’t really matter. I can’t open some cupboards as the hinges are broke, the kitchen wall’s falling down and the garden (yard) is a joke. We’ve not fixed the skirting and the kids room needs some paint. But we have other priorities,  stressed? well we ain’t. So what do I love about this place that is mine? I sleep here, I love here, where I spend all my time. My children were raised here, memories were formed, it’s cosy and comfy and snug and it’s warm. We have a door with a lock to shut the world out there. We have colour and brightness and laughter and cheer. There are books everywhere, cooking smells and incense, drums and guitars, music and fun. Toys are not kept in one place hidden, there is no room to which entry’s forbidden. We have plenty of space with high ceilings, nooks and crannies, room to play hide and seek, room to put up visiting granny. Big bay windows that let me try to grow plants in pots, although if I’m honest, green-fingered, no, I’m not. I feel safe here, I belong here, I don’t want to leave this place, would not trade it in for lots more space. It’s my home, the kids’ home, R’s home, and also our cats’. There is Nowhere I want to be more than snuggled up in this flat. 

– For My Summer Girl aged 6 and a half.