BLOG: Photosensitivity and the Importance of Access Information
Posted on 27.05.2016
Guest blogger Alice Kirby, a disability activist from Sheffield, shares her experiences of accessing music venues while photosensitive.
Disability access has come on leaps and bounds since the Disability Discrimination Act was introduced twenty-one years ago, but there’s a long way to go yet. There’s still a real lack of understanding around access, specifically unconventional forms, and I’d like to share my experiences of this.
I'm photosensitive and flashing or flickering lighting can cause me to have seizures. It’s a common misconception that only strobe lighting can cause this; any lights that flash at a high speed can affect me. They can cause absent seizures or ‘tonic clonics' where I fall to the floor, lose consciousness, and my body convulses. Changes in lighting can also affect me.
Photosensitivity can affect people with a range of conditions. My seizures aren’t epileptic, they are caused by a condition called Functional Neurological Disorder. I also have Irlens Syndrome which makes me very sensitive to bright lighting. I often wear sunglasses inside because the brightness can make me feel sick and dizzy.
When I want to go to a gig, I have to approach the venue beforehand and ask for access information. This often proves much more difficult than you might expect. I need to know what type of lights are used and how fast they will flash, and many venues don’t know these particulars.
Recently I had a bad experience whilst trying to access this information. I surprised my mum at Christmas with tickets for us both to see Adele. I emailed the venue asking for details on the lighting but was told they wouldn’t know the directions until a month before the gig. I emailed a month before and was told they wouldn’t know until the week before. I emailed the week before and they said they still didn’t know!
On the morning of the gig, less than ten hours before Adele was due to be on stage, I received an email from a manager. She said they hadn’t been able to get hold of the information as lighting instructions were kept secret from the venue, and that I would be attending the event at my own risk.
It was an incredibly frustrating situation. I had given the venue more than three months' notice, and yet they still told me that it wasn’t possible for them to get hold of the lighting directions. It was even more irritating that they waited until the very last minute to tell me this, because in previous emails they kept promising they would get back to me with the details.
Looking to the future, I hope access information is made more easily available to disabled people. Not providing it means we aren’t able to make an informed decision on whether we can attend an event or not.
Luckily, friends of mine had been to see Adele a few days before at the same venue and were able to let me know that the lighting was Alice-friendly. But without their advice, I wouldn’t have been able to go. Seizures are never nice, and I wouldn't have risked having one in the middle of an arena filled with thousands of people.
The bizarre thing is, the gig was completely accessible to me! The lighting was gentle and very slow. It was quite bright but my sunglasses did the job at dimming it. There was nothing stopping me from going, yet the venue was apparently unable to provide me with the information that I needed to make an informed decision on the issue.
While I’ve had quite a few negative experiences like this, I’ve also had some extremely positive ones too. When approaching venues on a night out, I ask the bouncers about the lighting inside. Some places have let my friends go inside to check it out and see if it’s accessible to me beforehand. And on a few occasions when it hasn’t been, staff have offered to turn the lighting off for me, which is very unexpected and absolutely wonderful.
Looking to the future, I hope access information is made more easily available to disabled people. Not providing it means we aren’t able to make an informed decision on whether we can attend an event or not. The choice is unnecessarily taken out of our hands, and this isn’t fair. I think that venues should offer this information online so people can read it before booking tickets. It would make it much less stressful and would avoid situations like the one I found myself in.