Stay up late: Self-advocacy and Nightlife for People with Learning Disabilities
‘Although we’re called ‘Stay Up Late’ we don’t actually care what time you go to bed – as long as you get to make that choice’.
I’ve had the pleasure of working in Bromley recently, listening to people with learning disabilities from across the borough. I’m hearing their stories, particularly to understand what matters to them and how they want to live their lives. One of the things that comes up time and again is their desire to live like other adults; to have the ability to choose when they go out and with whom, to be a valued member of society and to be granted the support which opens doors rather than limits them.
Stay Up Late is a charity based in Brighton which is doing just that. Their story begins with a punk band called Heavy Load which was made up of five musicians, some of whom had learning disabilities. During their live performances they noticed how many of their audience had to leave by 9pm – just as they were getting into it – because their support worker clocked off at 9.30pm so needed to get them home.
This was a big issue for the group members as going out and seeing bands, meeting their friends and doing what they wanted is an important part of their own self-expression and personal identity. Being denied this can be socially isolating and can prevent people with learning disabilities to live the life they wish to lead. These sentiments were strongly expressed by the people I had the privilege to meet in my time in Bromley; many of them felt limited and dependent on their support workers’ schedules or their parents. Most of them felt they did not socialise enough.
Heavy Load decided to set up the charity – Stay Up Late – to create ways by which people can be free to get out and about and to support other organisations to consider how they too can follow their lead. In 2018, they launched their Manifesto for an Ordinary Life which includes things like:
- The right to decide how I spend my time and when I go to bed;
- The right to fall in love and have relationships
- The right to a paid job
- The right to have a say in who support me
Gig buddies is just one of the many projects they run on the ground. This is where they pair up people with and without learning disabilities to be friends and to go to events and gigs together. They hold club nights DJed by people with learning disabilities and they showcase their original music through their Wild Things compilations and online festival. They also campaign with people and self advocacy groups to help turn their manifesto into a reality.
I shall be sharing their work with people in Bromley to inspire them to be ambitious – or to simply support people to live an ordinary life. If you would like to get involved in campaigning to stay up late, you can contact them at firstname.lastname@example.org.
Photo by William White