It’s been eight years since I’ve attended an outdoor festival.
Once upon a time in Cokerland, the party people of the place had an understanding; April was for arrangements. Blossom on trees signalled t’was summer schedule setting season. Messages would be flying from chat to chat, itineraries would include outdoor activities such as festivals, grown folk playgrounds, film screenings, park life, Notting Hill carnival and day parties. My outfits were skimpy and shimmery; legs out, arms out was my rule of thumb. The sunset always saw me coming. Jubilantly I’d party hard, as the sun beat down on my head, shoulders, knees and toes, summertime felt like a dream.
Then came lupus and photosensitivity. I hadn’t appreciated the freedom of summer fun until it became forbidden. When first diagnosed, I’d given up caring for a teen due to the seriousness of my condition, and while they moved to a wonderful carer, it impacted their stability, they lost extended family and was another trauma in their life. When I returned to fostering in 2020, I vowed not to take risks that would mean I’d have to put another child through that. In early 2020 I visited Nigeria and despite only walking outside for five minutes at a time, my skin flared up. I returned to the world on lockdown and due to shielding my only source of fresh air was the time I spent in my garden at dusk which exacerbated my skin issues. I experienced my most excruciating flare to date. This is all a preface to say that I know the result of “risking it”. My body remembers the pain it felt; my heart lives with the guilt and grief of letting a child down.
I’m now used to declining sun exposed events. I’ll still go to the park etc, armed with my UV tent and while it’s still somewhat isolating at least I’m present.
Crystal Palace Bowl this year had a fire lineup, I wanted to attend a few of the days, but resigned myself to living vicariously through friends, attending meant being without shade for hours in 30+ degree heat. One beautiful friend had enough of my “sorry can’t – the sun” replies and insisted that I shouldn’t always have to miss out. I explained that I’d attended the same venue for a concert years prior and was denied entry with my UV umbrella. Even with my medical letters as proof that the umbrella was a medical aid, I was told to leave it at the first aid booth or throw it away. I tried to find shade but became weak and triggered and had to leave without seeing the act. I’d paid £80 for the ticket. So, my friend wrote emails campaigning to the organisers on my behalf, explaining how photosensitivity is a disability, how UV exposure and heat could seriously affect my health and impact the lupus, she requested that reasonable adjustments be made to allow me to attend the festival.
The festival had already begun when she received a reply (a month later) from the head of accessibility. It read “Maryann can bring her larger parasol to use in the accessible viewing areas given the circumstances, however there may be times when she might be asked to store it when the viewing areas become busy. This tends to be later on in the day when the sun is lower/there is more natural shade across the viewing areas. We also have a pop up tent behind the viewing areas where customers can sit out of the sun for a while”. This may seem acceptable to some but the sun being lower is still exposure, being asked to store my parasol during busy times is still dismissing the disability, it’s like saying you’re allowed to be disabled when it’s quiet and convenient but not when we’re busy. The tent should be accessible to for an unlimited time not for a short while, and it being behind the viewing area means that I wouldn’t get to see the acts and while hearing them is great that’s not the experienced I would’ve paid for. I was disheartened, this was a chance for the organisers to change things, not just for me but for all who are excluded from outdoor events due to skin conditions, people with cancer, eczema and whose medications make them vulnerable to UV. Festivals and outdoor events could make their accessible area shaded to include those with skin conditions. I don’t think it’s too much to ask, so I said so in my response.
It shouldn’t have to be a choice between risking your health or always missing out. Now I’m on a mission to effect change to make outdoor accessibility provisions inclusive of those with photosensitivity, so hopefully this time next year others like me, and maybe you reading this, will get to enjoy festivals, safely!
Article by Maryann
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