The battlefield of live music

I mentioned in my earlier blog post that I was hoping to put something together about accessibility for all at live music events, so here are some thoughts.

Going to watch live music is probably my favourite thing to do. I get such a buzz from experiencing music performed live and it gives me a greater appreciation and enjoyment for the music that I listen to. If I've seen a band or an artist live, every time I hear one of their songs on the radio or on my MP3 player it takes me right back there and I enjoy it ten times more than I did before I'd seen them. Enjoying live music isn't just about knowing the words to the songs or seeing famous people close up (when, before, they have only ever existed inside a speaker or on a screen). To me it's also about soaking up the atmosphere and being in a place with tens, hundreds or thousands of people all living the same moment, dancing to the same beat and singing the same lyrics all at the same time with the same love and enthusiasm for that band or piece of music.

Music is also really easy for anyone and absolutely everyone to enjoy. All you have to do is be there and take from it whatever you want. Whatever state I have been in, I have always been able to enjoy music whether it's listening to it, watching it on a screen or just reading the lyrics. There's never been any barriers to enjoying music. It isn't like playing a sport or taking up a hobby. You don't have to have energy or concentration or even spare time to enjoy music. It doesn't matter if you are in a wheelchair, if you are blind or deaf or can't speak, can't read, if you suffer with anxiety or depression or a chronic illness with every other restriction on your life that you can think of - music can always be enjoyed in some form.

The sad thing is when music is live there are unnecessary barriers for people with disabilities of all kinds. All they have to do is be there, and yet they can't even do that? When you think of accessibility, you probably think of wheelchair ramps, toilets and 'disabled areas'. But what use is a wheelchair ramp to a deaf person? What use is a disabled platform at the back of a venue to someone with only an immediate visual field or no visual field at all? And what use are these facilities anyway if a wheelchair can't fit down a corridor or inside the disabled toilet? What use is it having a wheelchair space right behind or within standing room - how are people in wheelchairs supposed to see?

I attended a very limited amount of gigs when I was a wheelchair user -  because I was too young for many of the venues and I wasn't well enough to go out most of the time anyway. But I did attend a few music events - I remember one in a bar and one in a theatre. The access to both of these for me as a person in a wheelchair was, so-so. The bar had very narrow walk ways and a few bumps and steps which were navigated. The theatre had ramps but the wheelchair space was a little out the way. I still enjoyed both gigs.

I haven't needed to use a wheelchair in several years now, which is great, and I started attending gigs like an able bodied person. This has meant I have been able to join in with the crowds and get really close to the front, which at first seemed great but I soon discovered it was very unsafe. I realised that being in a wheelchair was not the only disability affected by inaccessibility to music gigs - wheelchair users are the tip of the ice-berg. They are the disabled people that everyone can see and that everyone attempts to cater for, or at least make it seem like they are catering for them. Underneath that ice-berg, within the crowds of people at music gigs (or not to be seen at music gigs at all simply because it is not safe or possible) are people with additional needs - non-wheelchair users, deaf people, blind people, people with sensory disorders, epilepsy, people like me who carry tubes and machines, people with anxiety who can't face crowds, people with learning disabilities and so many other people with their own unique set of needs.

For anyone who doesn't know, I have complex medical needs. My Ehlers-Danlos Syndrome means that I am prone to frequent dislocations or subluxations at the slightest knock and also means I sometimes struggle being on my feet for too long. I also have a complex bowel disorder which means I have a surgical tube anchored into my stomach - this contains a drain, which empties my stomach, and a feeding tube which goes part way through my gut into my bowel on the inside and is attached to another long line on the outside (my giving set) which is attached to a pump and a litre of special formula in a back pack. The back pack alone can be heavy and hurts my back and shoulders, but it has a stand built in so that where possible I can put it down.

My condition also means I can get tired quite easily. I also spend long periods in hospital when I get sick, and the period around these admissions usually means that I am much less mobile that usual. Sometimes I can stand for the whole gig, but when I'm (more) ill I struggle to stand for longer than a few minutes. 

I found out the hard way that it is really unsafe, uncomfortable, painful and quite frankly terrifying to enter a crowd with these tubes. My tube is not invincible and it does not take much to rip it out of my stomach - this I have done, three times. None of these times have been through anything anywhere near as energetic as gig - I've done it once in my sleep, once whilst I getting up off my bed and once whilst I was getting up off the sofa. It really does not take much, just a quick pull and it rips straight out and requires a prompt trip to accident and emergency. During the festival I went to over the summer, it got really beaten and bloody and was very painful for about a month whilst it all healed. That was the first and last time I took it in a crowd. 

It's not just a lack of facilities that make a venue inaccessible or unsafe though. The other two culprits are awareness and attitude and I feel that these are even more brutal than a lack of accessibility. Accessible facilities may require expensive resources and complex building work, but awareness and attitude are completely free and the only resources they require are common sense and an open mind. Despite the fact that accessible facilities are expensive, most places attempt them which is more than can be said about the attitude of the staff that I have come across. In fact, in no other area of my life has my illness been met in such a demoralising manner as it has at music events non more so than when I saw The Vaccines, which was discussed in my previous post. 

I have no problem with being bag searched and I have no problem explaining what is inside the bag. Equality means being equal to those without disabilities and does not mean getting special privileges. If able bodied people are bag searched, then my pump bag must also get searched. It wouldn't be safe if venues were letting those with medical conditions get away with bag searches. But my feed bag is delicate and so I must tell them 'please be gentle with it' - if my feed bursts then I'll get very wet, sticky, smelly and will have to go home. I'll also drip all over the floor and they'll have to clean it up! They aren't always gentle with it because they probably just think I'm being an awkward customer. But being asked 'if you really need all this' and staring at it for an extended length of time is not necessary. 

Being made to explain time and time again to multiple members of staff why you're disabled and why you are deserving of being safe is also demoralising. I shouldn't have to prove myself as 'being disabled enough'. It often feels like I'm making a big fuss and I absolutely hate making a big fuss. I don't want special treatment, I just want to be treated like everyone else. I just want to be able to enjoy my favourite bands without being pulled apart. I don't want to put my health at risk just because people are ignorant and don't understand my condition. I am happy to educate but I am not happy to explain myself a dozen times to find out if someone else thinks I am worthy of a safe experience. This is what it feels like.

Having your disability questioned is not nice and it does feel very personal. My disability does not have wheels but I am not the only person ever to exist with a feeding tube - there are thousands of us in the UK - and I am not the only person with a non-wheelchair disability who would like to enjoy music. 

The staff at venues are not always the only ones to blame. The very sad thing is that discrimination sometimes comes from other music fans. Disabled people are your equals - they are sharing a passion with you at these events and it's the perfect opportunity to see past disability and focus on a common love. But people will stare at you when you are in a wheelchair. They will notice you and say nothing and stand right in front of you. They will push you out of the way because they can. They will take a seat (to stand on!) that you desperately need to take a break on. They will stare at your wires and lines and notice you are being pushed and take advantage of that, joining in to push you further back so that they can get a better view. People come out so selfish at live events. If you notice someone is struggling, help them - offer them a seat or make some room for them - be human. If you notice someone is stood in front of them, tell them to stand aside. Ask them if there is anything you can do, there might not be but they'll be glad you asked. If you can't do any of this, at the very least do not stare at their disability!

I'm really keen for people to understand that having a disability is not always visible and if someone is asking for special requirements that is not the same as special treatment. Having a disabled platform is a great start and it can cater for many disabilities outside of having a wheelchair. If someone asks for access to the disabled platform and they do not have a wheelchair, they are not faking or using their medical condition for special treatment. Chances are the disabled platform does not actually have the best views in the house believe it or not. But for someone like me, it can give protection from the crowd so that my lines don't get pulled, so that I can stand my bag down somewhere safe on the floor so I don't have to keep it on my back all night and so that I can sit down if I want. I cannot give a thorough experience of disabilities that I do not have, but I've been catching up with some friends who have been offering their own experience of disability at live events to help me write this post. I know that for a blind person a crowd can be very disorientating and the disabled platform is therefore a much safer and more comfortable place for them to enjoy the music. 

At the same time, having a disabled platform does not cater for all types of disabilities. I've also learned that deaf people can enjoy music through live signers and the vibrations of the music. I read this article last week about a deaf rapper who is taking on the music industry to prove that music is for everyone. There is an infinite number of unique disabilities with unique barriers all with a unique solution. We just need to have an open mind and perhaps be a bit creative so that we can include everyone in one of the most naturally accessible forms of entertainment there is.

The only barrier is attitude.

Please visit this appropriately named charity for excellent information and campaigns for accessibility for all at live music: www.attitudeiseverything.org.uk

Goodbye December, hello 2016

It's been two days short of a month since I've blogged. Part business, part laziness, part chill out and part going through a bit of a mood lull. But here I am, fresh out the 2016 portal.

I'm unsure what order December went in but I had some appointments, went out with friends, finished all my assignments did a bit of relaxing and was reunited with Sam. I also saw The Vaccines on Friday 4th December in Blackpool with Katie and Kodaline on Saturday 5th December with Irwin, Becca and Little Meg. My next post was going to be about some issues I have faced this year attending music events with medical needs/disability and so I was considering how to go about it. It will definitely still come I just need to write my piece.

We had quite a terrible experience at The Winter Gardens, Empress Ballroom in Blackpool where I was made to explain myself to about eight different members of staff, had my feed bag searched and was asked 'do you need all this?' and then, after I felt like I had already explained myself to everyone in the building, we were approached by a member of staff and told 'this area is only for disabled people.' I had initially considered posting on my blog the letter that I wrote in complaint to The Winter Gardens, but I think it's a little bit too personal and although writing it was necessary it was also quite demoralizing. Buttttt, I will be putting something together for a blog post to talk about this because going to live music is something that I love doing and there is no reason why my condition should be a barrier. I've been talking to a few of my disabled friends about their experiences with access and attitudes to try and learn a bit more about the range of issues disabled people face, outside of my own.

That said, The Vaccines were absolutely amazing and despite all that happened, it was the best live performance I have seen yet. They are such a good band; my absolute favourite. Katie and I had an excellent night and we both came out absolutely buzzing. So much so, within a week I'd booked to see them again in Cardiff with Stereophonics in June with my Dad. I'm so excited! There was the option of seated or standing room so we've gone seated and I haven't had to deal with accessibility facilities at all which makes things easier.

The days following The Vaccines I was fortunate enough to speak with a lovely man called Gideon from a charity called Attitude is Everything who work to improve facilities for people with barriers to live music. Gideon helped me to contact the appropriate people to ensure that my complaint was heard and dealt with and was really supportive in helping me sort things out and making me feel better about the whole situation. I'm hoping to get more involved with this charity in the new year because I think it's great and I'm now aware how much these sorts of campaigns are needed.

I also want to just mention that some people may be wondering where their Christmas cards got to. Unfortunately because of everything that has been going on this year Christmas cards just never got written. My Mum stopped sending Christmas cards a few years ago and now donates to charity what she would spend on cards/postage. Since I never got round to writing or sending cards I have made a donation to Attitude is Everything instead. I do hope everyone had a wonderful Christmas and a happy new year though and hopefully next year Christmas cards will resume as normal!

The following night we went to see Kodaline at Manchester Apollo and we had a much better experience on the disabled platform which was situated within good view of the stage for a change. We were really well looked after and Kodaline were also excellent. Everyone had a really good night and the atmosphere was brilliant. They did a pretty similar set to the one we saw at V-Fest but nobody minded because it was an excellent set and it brought back all the memories.

The following week my top student nurse Meggy B flew back from Uganda and we were reunited at Manchester Christmas markets which were good fun. I also didn't buy anything which is so great for me. The same day I got to see Gina and John again after about 5 years (?) at their little workshop in Afflecks. Gina and John taught me expressive arts (which I loved) and drama (which I was shit at) in my first timid year at college and they gave me a whole massive dose of confidence. John also taught me how to play guitar. It was so so lovely to see them both again and have a short catch up.

The next day I went to Chester markets with Laura which was my favourite thing ever. There is just never enough time in the world to do everything we need to do and talk about everything we need to say but our day was cute anyway and I bought some new earrings and a new hat at the market which was good. And I refrained from buying another woolly jumper... which was also good.

Two days later Sammy arrived back from the Isle of Man and within hours my tube fell out and carnage ensued from there and has continued to do so since then. Salford were ever... 'helpful' and even though I'm not under Wythenshawe any more, Radiology (genuinely, my favourite hospital people) sorted me out with a new tube the day after hearing about it. Unfortunately the new tube is leaking but I'm really so tired of dealing with it all so we'll just call 'tube' a swear word and I'll update when the problem is sorted. Until then I'm trying to distract myself and have a bit of fun anyway on hardly any nutrition.

My Uncle Howard and Auntie Pam were over as usual which is always the most fun part of Christmas. They'd been to South Africa this year and Uncle Howard outdid me by cage diving with Great Whites so it was so amazing to hear about that and just generally catch up on everything we'd all been up to this year.

Katie and Tom hosted an excellent New Year party in their beautiful new house with plenty of my favourite people and I had such a good night playing games, listening to good music and doing sparklers at midnight.

Thank you to everyone who has been there for me this year especially my three ace housemates who put up with me at my worst, Becca for being my BFF, Sam for being my bae, YOLO (especially Katie for having excellent taste in music and putting up with me at gigs), the English girls for helping me to not fail and for general loveliness, Rebecca for keeping me sane in Salford, obviously Laura for being the primary reason I have survived this far in life and many more people who don't read this blog. I'm so grateful for everyone. When things are shit I always feel loved and never lonely!

Hope you all have an excellent 2016! Many of you are overdue a good year and the rest of you deserve one!