I used to say that nothing would ever come between me and my love for live music, especially when it comes to rock and heavy metal. But just lately, I’ve been seriously questioning not only my desire, but my ability to attend some of the larger all day events and festivals that most of my favourite bands only ever seem to play these days.

Those feelings certainly came to the forefront on Saturday when Sonia and I attempted to attend Iron Maiden’s EddFest at Knebworth. A day we’d really been looking forward to. A day we were both overly excited about. But a day we never want to experience again. And one we’d most rather forget.

I won’t go into too much detail here, because it’s already been covered in my previous post, but the way I felt treated as a disabled festival goer on Saturday, and the way I still feel today, some 5 days later, could quite possibly be the first hammer blow to the final nail in my coffin as far as attending future festivals and larger events goes. Not just at Knebworth, but anywhere.

Let me explain.

As a disabled man with severe uncontrolled epilepsy and mobility issues, I sometimes need a little extra help when it comes to attending gigs and festivals, most of which is provided by my wife Sonia and my friends, but every now and again, we need to reach out to the venues or event organisers to make sure my basic needs can be met once we’re there. Or at the very least, it’s going to safe for me to attend.

However, please don’t mistake me for one of those people who think they have a God given right to every little request or demand they make just because they happen to have a disability. I’m nothing like that. If my needs can’t be met, we’ll try and work around them, and if possible, we’ll try and come up with another plan. All we really want from venues and event organisers, is to be treated with a little respect and dignity, to be able to enjoy the show that we’ve paid good money to see, and to be safe whilst we’re there.

If there’s no room available on the accessible viewing platform or all reserved seating is already full, then so be it. Tell us where we can sit where we’ll be safe?… If we apply for a carer/companion ticket and they’ve already been allocated elsewhere, then it’s no big deal, we’ll simply purchase another ticket… and if we apply for disabled parking at the venue and there’s no room, it’s not the end of the world, just tell us where we can park that’s close to the venue, and what help is available with getting between the car and performance area if needed. It really shouldn’t be that difficult.

What we don’t expect, is to be told that the disabled car park is full when ordering tickets, when there are clearly spaces available. To be directed to the furthest car park away from the arena despite displaying my blue badge and Nimbus Disability Access Card. To be ignored by, and lied to by staff on the day. For information provided on official websites to be unclear and inaccurate. Or to be expected to complete a very long trek across rough uneven terrain in 30ºC+ temperatures with mobility issues and no access to water, without any help what-so-ever from staff or event organisers. A walk which even able bodied people were clearly struggling with.

Like many others who were struggling on Saturday, especially those with disabilities or additional needs. I was left feeling angry. Let down, Forgotten. Ignored. Not to mention in severe pain, unwell, and unsafe.

Despite many stops along the way in order to rest for a few minutes, by time we reached the three quarter mark of the afore mentioned trek, the damage was already done. I was physically unable to go any further and just wanted to go home.

But the day wasn’t just about me… it was also about Sonia. Yes, Sonia had purchased the tickets as a gift for me for Fathers Day, but I’d also made a promise to Sonia many years ago that we’d go and see Iron Maiden play live if ever we got the chance… and now that that chance was here, I had to break that promise, and for no other reason than because ‘I’ was struggling. It’s embarrassing.

So now, I was no longer just feeling let down and angry. I wasn’t just feeling forgotten and ignored. I was no longer just feeling in pain, unwell, and unsafe. I was now also feeling embarrassed and upset. Upset because I knew I was going to miss the show. Upset because I knew Sonia’s was going to miss the show. I was upset because I felt like I’d let her down again. Like I’d broken my promise to her. I’d ruined her day. I’d wasted not only her time, but also her money on a show that we could longer attend, because ‘I’ physically couldn’t. We’d travelled all that way, and for what?

Do you know how bad that actually makes me feel?

It makes me feel guilty… Useless… Worthless… Like a chain holding Sonia back. It makes me feel like I’m nothing more than a burden on both her and my friends. And that hurts. It hurts a lot.

And it doesn’t matter how many times you’re told it’s okay, or it’s not your fault. It doesn’t matter how many times Sonia says she’s not bothered or she understands, or ‘it is what it is’. It’s always there. That little look on her face that only I can see. That little sound of disappointment in her voice that only I can hear. It’s absolutely not okay. How can it be? Of course it’s my fault… Who else is there to blame?

Now take that physical pain, those mental thoughts, and those uncontrollable emotions, and add them to those already existing heightened levels of stress and anxiety that days like these help to create, and it’s easy to see why I sometimes find myself on the brink of a complete breakdown. Physically I was broken. Mentally I was lost. Emotionally I couldn’t cope. And all because there was no help available to get me (and others) from point A to point B and back again safely. We were all let down. Ignored. Cast aside. Forgotten about. It isn’t right.

It’s no wonder I ended up feeling so unwell and in so much pain I had to seek medical assistance. It’s no wonder we ended up missing the show completely and ended up going back home, dangerously having to exit the venue against oncoming traffic to a tirade of abuse and intimidation from other festival-goers, all-be-it under the instructions of security staff.

Talk about kicking an injured man when he’s down.

Just to be clear though, not all staff acted in the same manner on Saturday. Some really tried to help us and treated us with at least some level of respect and compassion, trying their hardest to try and salvage what was left of the day and find us a way of being able to enjoy what was left of the show. Some even went above and beyond their duties. But it was too late… Again, the damage was already done. Physically. Mentally. Emotionally. I had absolutely nothing left.

Our drive home was done more or less in complete silence. I didn’t know what to do, I didn’t know what to say. I still don’t. I felt exhausted and still haven’t fully recovered. Yet another day completely ruined by yours truly.

How am I ever going to be able to make this right? And how can I stop this from happening again? Because other than opting to never attend such events again in the future, I don’t have the answers.

Luckily, our gig calendar for the rest of this year doesn’t include too many more festivals or larger events, our next ‘big one’ being Bloodstock in just three weeks time. But we know Bloodstock well. We have Bloodstock sussed. We know where we’re parking… We know there’s transport available between the car park and arena if we need it… We know it’s only a relatively short walk to the arena from where we’re dropped off… We know where we can sit and be safe… And we know there’s accessibility staff and medical staff on hand to assist if and when we need it. Not just inside the arena, but across the whole site. We know exactly what to expect from Bloodstock. A total contrast to our experiences on Saturday.

Fact is, I don’t personally know to any other festival or event organiser, that is as good as Bloodstock when it comes to their understanding and treatment of those with disabilities or other medical needs. They have it spot on, and should be commended for the work they put in to making the festival accessible and enjoyable for everyone each and every year. They’re a real credit to the industry.

But the following week however, we have another large scale event to attend. An event with no available seating and a complete ban on personal chairs. And yes, I still need to contact the event organisers for this one in the hope that something can be sorted accessibility wise, because if not, it’s beginning to look like another non-starter. Well, for me at least.

Another show where I may have to let Sonia down again. Another show that I may have to miss out on. Another all out attack on both my mental and emotional wellbeing. Although this time, we still have plenty of time to make other arrangements if needs be. We still have time to find someone else to accompany Sonia, even though I know deep down that’s not what she wants. But at least she’ll still get to go. She deserves the break. She deserves that little bit of time just for herself. And she deserves to have a little fun and enjoyment without me and my disabilities holding her back and weighing her down all the time.

These next two ‘big’ events and the way we’re treated and left feeling, both physically and mentally, are going to have to be the ones I set my future festival and all-day events going future on. Not just for my sake, but for Sonia’s too.

If they go well, or not too bad, or even if they’re only just about manageable, then at least there’s still some hope that I can continue attending future shows and be able to enjoy seeing some of my favourite bands live for many more years to come. Or at least until my health deteriorates so much it becomes impossible for me to do so anyway.

But if not. If I do find myself struggling physically to that degree again. If I do find I can’t cope mentally or emotionally any more. Or if we feel severely let down by venues and event organisers again, the way I feel we, and many more were on Saturday. Then I’m afraid that’s it… The end of the road… No more. And that just doesn’t seem fair.

Disabled people aren’t asking for the earth, well not the majority of us anyway. We just need a little extra help from time to time to enable us to enjoy the same things that most able bodied people do.

It’s not our fault we’re broken. We didn’t ask to be this way. It’s just who we are.

Please don’t make us feel any worse than we already do. Please don’t make us feel any more excluded.