Think festivals aren’t for you? Where do you charge the chair? then there’s the toilets…

All these things we considered when we started local at Guildfest, camping in a manual chair.  OK, so that was doable!

Then we ventured a bit further to Weyfest in Farnham; two boys in manual chairs and me in a three man tent….

Day 4.25

Plenty of concerts later, we revisited the camping festival ‘thing’.  This time my son (now 21) was in a big powered chair. He has Duchenne muscular dystrophy.

We had our eyes on Download festival; a feast of heavy metal and rock. Linkin Park and Aerosmith were headlining, what’s not to like?

First plus is as a carer you go free after the usual DLA check. Secondly, there is a specific camping area set aside especially for people with disabilities. There’s a very helpful team on call 24/7, a tent dedicated to charging wheelchairs and other equipment, a proper trailer with disabled loo hoist and bed.

Download is at Donnington Park the home of motor cycle racing, so it’s a big site, but free shuttle buses from the disabled camping area take you to the village where there’s a lift for wheelchairs.

Access to the viewing platforms is, of course, key.  Carers receive a PA lanyard so you can swap it around. There are viewing platforms on all three main stages with disabled toilets close by.

My son drives a VW Caravelle, so the first time we went, we just took the van kitted out with blow-up beds and an awning. The camp site people helped me put up as I’d bought it in haste only to find no instructions! We brought along a mobile hoist to sling him on to beds.

The next year Kiss and Muse headlined.  We hired a Panorama from GM Coachworks, the only wheelchair campervan on the market which comes with a cute little cooker, fridge and chemical loo. Technically you can sleep 4 but it would have been a squash.

This year we wimped out and went for comfort. We booked into a hotel next to East Midlands Airport and travelled the few miles into the festival each day, parking in the disabled parking zone for free. As it rained solidly for three days we were glad to sleep in clean beds and shower every night.  It was worth it just to see Black Sabbath on their final tour.

We will definitely be going again next year!  You see all sorts, from tattooed Harley Riders to young babies.  Nothing is too much trouble if you need a push in the mud, or an extra hand to carry your beers.  Although this year they introduced a charity waiter service from the viewing platforms which certainly saves you the bother and for a small donation, local charities benefited. NXT wrestling was a big hit with my son this year, we had front row seats.

If you like live music there’s a choice of festival for everyone’s tastes. Take advantage of the free PA tickets and try camping, it’s a lot of fun!

Janet Bloor (pictured above with her family) is Chair of the Board of Trustees at Action Duchenne. Janet has been a supporter of Action Duchenne for many years and has a 22 year old son, Phillip, living with Duchenne.  As a Legal Advisor and barrister, Janet has also acted as an advocate for many families living with Duchenne.

For more information on how to access events, hints and tips, contact our friendly team [email protected] or 020 7250 8240.