BLOG: “I’m determined to help improve access for all disabled music lovers”

Posted on 22.07.2016

BLOG: “I’m determined to help improve access for all disabled music lovers”

The author, Deena, and her sister at Glastonbury 2015

Find out more about Mystery Shopping for Attitude is Everything.

I've been attending music festivals and gigs since the age of fourteen and music has always been a big part of my social and family life. When I developed debilitating chronic illnesses at the age of twenty-five, my condition was so severe that going to gigs and festivals was one of the many activities I assumed that I would have to give up indefinitely. At first I began to suffer disabling chronic daily migraines and was subsequently diagnosed with Postural Tachycardia Syndrome and Hypermobility Ehlers Danlos Syndrome. Photosensitivity caused by bright or flashing lights can exacerbate the head and facial pain I experience every day, often triggering serious migraine attacks. Noise sensitivity means I also have to take extra caution when choosing a place to sit and watch bands. Additionally, my autonomic condition can cause blackouts, fainting and extreme fatigue when standing longer than a few minutes or when using stairs. I also suffer from joint pains that can make standing and walking very difficult.

Three years ago, in an effort to distract myself from the everyday frustration brought on by my illnesses, I became determined to attend Glastonbury festival for the first time. Friends and family were sceptical but after some research I discovered that there is a disabled campsite along with shuttle buses, viewing platforms, access to disabled toilets and access routes to avoid the crowds. It was such a positive experience that I have been back every year since.

Since this breakthrough, rather than allow my disability to curb my enjoyment of live music, I apply for PA passes and look for disabled access facilities in advance. Unfortunately, not every venue was as accommodating. I was shocked when at a city based festival last year I was told that I didn't look disabled by a bouncer, and was asked to prove my disability even though I had already sent in all the paperwork prior to the festival. I soon reached the opinion that basic awareness training for door staff and security would be helpful to avoid similarly awkward and unpleasant situations.

These kind of attitudes towards invisible disabilities are very common but the more it happened, the more determined I became to help improve awareness and access for all disabled music lovers. Having experienced a frustrating hiatus from seeing live music, I knew only too well how heart-breaking it can be to feel like you can't pursue the activities you love that makes life worth living. This feeling is what drew me to the work of Attitude is Everything. It's empowering going to a gig knowing I can report on the positive and negative aspects of disabled access facilities and their attitude towards disability in general. It is also reassuring to know that my efforts might in some small way improve the experience of other people with specific access needs.

Not all of my experiences have been negative and for the most part I've been pleasantly surprised by the facilities and support available at many venues and events. There are many small and affordable changes that venues can make to ensure they're more accessible. The fact that I can now go out again when my illness allows is like a miracle and would not be possible without the disabled access facilities that many venues now provide – thanks in no small part to the affirmative action of groups like Attitude is Everything.

More recently I attended a volunteer run community oriented venue called DIY Space for London. I decided to brave it alone knowing I could get a taxi there and back fairly easily, especially given that inclusiveness and accessibility are at the core of their ethos. I was taken aback at how welcoming the volunteers were. The entire venue was wheelchair accessible and had various seating options and chill out areas. They'd even managed to raise funds for a disabled viewing platform in the performance space as well as having a lowered bar area, PA tickets and parking available upon request. I didn't once feel judged for requesting the use of facilities and have been back several times since for various events.

Without exaggeration, mystery shopping venues for Attitude is Everything has been one of the most positive and rewarding experiences I have had since developing chronic illness and I look forward to shopping more gigs and festivals in the future. I am committed to spreading awareness of accessibility issues and if my efforts improve conditions for just one person it will be more than worthwhile.