FOMO (or fear of missing out, if you must) is a slightly silly term. It’s meant to evoke the anxiety one feels when reviewing social media at home and seeing that all your friends are up to something cooler or more interesting than you. #FirstWorldProblems.
But actually, there are people out there whose social lives are at the mercy of the care system. A lot of the time, their fear of missing out is quite justified. People with complex needs, such as learning disabilities, often have to depend on their carers’ schedules and ability to arrange transport in order to do anything outside their home.
Heavy Load, formed in the early 2000s, were a punk band made up of 3 people with learning disabilities and 2 support workers. They noticed their shows would experience an exodus at around 9pm while everyone rushed to get home before their support workers had to finish at 10pm. That didn’t seem fair. From there, they got together a group of like-minded people and formed Stay Up Late, a campaign and an organisation that promotes full and active social lives for people with learning disabilities. Their latest project is Gig Buddies.
Gig Buddies pairs up volunteers and people with learning disabilities on the basis of common interests, including musical tastes. With proper training and help from Stay Up Late, the buddies go out to shows together and form a friendly relationship. Stay Up Late support this by asking that the buddies go out to a gig at least once per month, and ask the volunteers to commit to at least a year, so that they’re a stable presence in each other’s lives.
I love their punk rock ethos – for example, they decided to change the name of their Service User Advisory Group to “Storm and Thunder Team”, which sounds so much cooler I imagine it inspires them to get a lot more done. But they’re also great because they prioritise A) really listening to their members and finding out what their goals are and B) helping them make those goals happen, especially around having an active social life that they determine, on their own schedule. This is a recipe for better relationships, a better network of support in the form of Gig Buddies, and helping people feel capable of taking control of their own lives- all things we want to achieve for everyone through Relational Welfare.
Asked what they set out to do, former Heavy Load bassist and founder of Stay Up Late Paul Richards said:
“Listen to what disabled people want to do, how they want to lead their lives, and support them to do that.”
Couldn’t have said it better myself.
Kate Bagley is Campaigns and Content Manager at Participle. You can find her online at @kate_bagley.
Photo courtesy of Stay Up Late.