What’s so new about being in lockdown? | By Paul Richards, Director of Stay Up Late

Reflections on some of the current issues affecting people with learning disabilities and their far-reaching implications.

 

Information and advice

At the beginning of the first lockdown I was thinking about ‘Grant’ who lives near me. Grant has a learning disability and autism and lives with his elderly mother. Usually he spends a lot of his time walking around town, going to cafes. He is a well-known (and loved) character locally. I’m always running into him in all sorts of places around the city. I think he gets some sort of support but he and his mum aren’t online and don’t have much access to various local services for people with learning disabilities.

The first lockdown must have been an utterly bewildering event for him. It was for me I know but I at least had access to lots of information, a team and friends and family who I could share things with.

I often wondered what Grant made of the first lockdown when everything suddenly changed. At the start of the first lockdown it was confusing to find clear and simple information. My inbox bulged with information and guides and updates – and more updates, and easy read guides,  then easier to read guides came along –  there was too much being produced!!

What I really wanted was one place where we could access clear and concise guidance. The sort of information that I would have been able to share with Grant.

Now we’re in the same situation with information on vaccinations. We need to remember that many people with learning disabilities are on social media and so will have ready access to all the anti-vaccine disinformation being produced. In light of this we really need clear, strong and easy to understand information from the government. It must be easy read and it must be concise.

A real risk the clocks could get turned back 30 years

Another area that we need to give serious thought to is how support providers prepare for a return to some resemblance of ‘normality’ as places begin reopening. At Stay Up Late we have a community of Ambassadors –  people with learning disabilities from around the UK who campaign to make the lives of people with learning disabilities better, and for the right to have ‘No Bedtimes’ and be able to Stay Up Late if they want to.

One of the common things we’ve heard from the Ambassadors is the fear that the lockdown could set the lives of people with learning disabilities back decades. To a time when they weren’t active, or welcome, in their communities and where their right to a social life was not seen as a basic human right.

The ambassadors have helped us to write this guide for ‘Life After Lockdown’ to help support people with learning disabilities well.

 

Jason, one of the Ambassadors said:

“We don’t want a return to the bad old days of 30 years ago when support staff would never let you do anything”

 

 

 

 

As we come out of lockdown the risks are:

1. That people have spent such a long time not going out that it’s going to take some time to gain confidence and rebuild habits.
2. Other people may be so desperate to get back involved in things that they don’t heed the inherent risks of socialising whilst Covid is still prevalent.
3. There is a real risk that support providers and family carers become too cautious and prevent people going out at all. It’s not to say that they don’t of course have very real grounds for concern but there needs to be a management of risk.

Going back to providing clear information and advice and providing a supportive and managed way for people to ease back into community life.

We’ve all heard “you can’t do that for Health and Safety reasons” as a catchall excuse for stopping things from happening, even when the reason seems nebulous and vague.

We don’t want to hear that people can’t have a life because of vague “Covid reasons.”

At Stay Up Late, through our Gig Buddies project, we’re going to be doing all we can to support people with learning disabilities to be back active in their communities one step at a time.

As a country we all now know what lockdown and social isolation feels like. Let’s not forget that this has been the general life experience of many people with learning disabilities long before anyone had heard of Covid. We want to build on that shared experience and raise awareness of the inequalities that many people still face, but through being a Gig Buddy volunteer anyone can be part of changing this.

So we’re here at a time of hope as restrictions start getting relaxed. We have a real opportunity: not to turn the clock back decades but actually move things on.

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Stay Up Late is a charity that supports people with learning disabilities to lead full and active social lives.

 

 

 

We do this in two main ways:

1. Through challenging inflexible support systems through our ‘No Bedtimes’ campaign
2. Through our Gig Buddies project; matching up people with learning disabilities with a volunteer who shares the same passions and interests as they do, so as to build an ongoing friendship.

Gig Buddies has now spread across the UK and in to Australia.

The charity was founded by the punk band ‘Heavy Load’ and you can find out more about their unique story and why they started Stay Up Late here. Heavy Load the movie (one of Mark Kermode’s top 5 rockumentaries of the 21^st century!)

See our advice sheet on Life After Lockdown

Click here to Donate to Stay Up Late