After posting last week about our staff awards night and reading this week our chief executive’s blog on same, my mind suddenly fell over an uncomfortable memory. It concerned the contrast between the unspoken freedoms that attending this event represented and the infuriating and humiliating constraints that are the more common experience of most people with learning disabilities.

Heavy Load is a Brighton-based punk rock band comprising a mixed membership of people with and without learning disabilities and their mission is to change the way staffing shifts impact on their social lives. This is what they say

Lots of people come to our gigs, but they cannot stay out late to watch us. They have to go home early because their staff finish work at 10pm. Heavy Load are fed up with this! We think people with a learning disability have the right to stay up late and have some fun! http://stayuplate.org/

The sentiment is well-founded. In whose world do people get carted off home just as the night is livening up and the rest of us are moving on from the pubs to the clubs? Ok so being a little worse for wear at four in the morning isn’t exactly aspirational but it’s probably something most of us have experienced and either come to regret as our priorities changed or stuck with because it suits our cultural references – it’s ‘who we are’ in some way. The point is, along with the hangover and the embarrassing photos on Facebook, we get the choice and people with learning disabilities often don’t.

The Stay Up Late campaign is a powerful movement putting pressure on services to change their attitudes. It isn’t enough to offer kindness and well-meaning support with what’s termed the ‘activities of daily living’ or ADLs, people are entitled to a bit of life in their living, a bit of risk, some kick-ass, testosterone-driven, break your nose on the kerb life in addition to the accessible bank accounts, the budgeting books, and the IT publishing courses.

Most recently, the campaigners took on Channel Four and Big Brother for using ‘the R word’ – and won – so that’s it for broadcasting the pejorative ‘retard’ in exchanges of casual and offensive insult. Good riddance, most of us will say, but what next? Over the years, I’ve seen one term after another chased by discriminatory prejudice and ditched in favour of something neutral, only to find the prejudicial stigma catching up and contaminating another generation of descriptors. Look what happened to ‘gay’ for instance. Grabbed, re-branded and owned by the gay community and worn with pride, it got hijacked by teens and applied to anything they didn’t much like. Even broccoli. One hopes that is a passing fad but the underlying message has to be one of challenge to the stigma itself rather than reliance on shifting perceptions of certain words. To this end, Heavy Load, a very noisy, exuberant bunch of lads of indeterminate age, is putting itself out there and crashing stereotypes more effectively than five open applications on a Vista machine.

They have a long way to go. One of the buttons available for sale on their site says ‘Gay at weekends’ which speaks volumes about the kinds of limitations affecting this group of people. Unfortunately it seems they can’t even be people in any meaningful sense, whatever day of the week it is, unless someone else puts it on the staff rota – Monday 10-12 cooking, 1-4 art and craft, 7-9 be a person. So go on, get yourself a T-shirt, a poster, a badge maybe and show your colours. And the music? Well that’s, how shall we say, enthusiastic. You were warned!

Pictures from Heavy Load and Stay Up Late campaign websites.