This week saw the publication of a piece of research by Elaine James and the Adult PSW Network Co-Chairs Rob Mitchell and Mark Harvey. The research paper titled ‘An inquiry by Social Workers into evening routines in community living settings for adults with Learning Disabilities’ looks at the life when living your life in care settings. This researched involved the collective efforts of overs 70 social workers wanting to understand the reality of the of choice and real lives.
We were extremely pleased to when Paul Richards ( @Heavy_Load ) of Stay up Late and Gig Buddies fame agreed to write a blog challenging some of the concepts that lead to such arrangements and suggesting what we need to do. What’s clear is that as Social Workers we need to take responsibility for such restricted lives and be part of the solution alongside citizens. Over to you Paul……
Should I stay or should I go?
The recently published ‘Evening Routines in Community Living for Adults with Learning Disabilities’ makes for quite troubling reading. Of course as a charity called ‘Stay Up Late’ we are more than a little interested in the findings but one of the things that really jumped out of the inquiry for me was the manipulative way in which the word ‘choice’ is used to explain why people are tucked up in bed by 8.30pm.
Stay Up Late started out as a campaign by the punk band Heavy Load, three of the members had learning disabilities and I was the bass player. We used to play all over the UK and would see many of our disabled fans leave at 9pm, often before we got on stage, due to support staff working inflexible shifts. Things came to a head one evening when we’d played a local gig in a pub to a packed crowd. We were enjoying our ‘post match’ beer when Michael, our drummer, was asked to drink up by his support worker as it was “time to go home”. Suddenly everything that was so great about the evening was tinged by a support worker who wasn’t celebrating this with Michael but was more focussed on their watch. Heavy Load were the subjects of the feature documentary (also called ‘Heavy Load’) and one of the central scenes is where Michael continues to be frustrated by support staff who, when he says he wants to move to a more vibrant town, tell him that he has no ability to exercise any choice in matters like this. It’s a crushing moment for him and a scene that often brings seasoned professionals in social care to tears. Not because there’s any terrible ‘Winterbourne View’ scale type abuses happening, but because they recognise how easy it is for individuals hopes and dreams to be crushed by a care setting that’s made it’s own rules and expects individuals to comply with them.
Many of the rules that people live by seem so ingrained that it’s difficult for people who live and also work in those settings to challenge them. At Stay Up Late we often hear that the reasons given for people not being able to stay out at events is due to needing to take medication, staff hand-overs and shift patterns. These are all things that can be changed with thought and planning. Most medication can be given to people out in the community and there is no good reason why staff shifts can’t be adjusted.
I was talking to one of our Gig Buddies recently. He’s a young man with a learning disability who was at a disco run by a local friendship and relationship organisation for people with learning disabilities. At 9.30pm he observed a support worker go up to someone who was dancing and told them it was time to go home because “they finished work at 10pm and were going out to meet a friend of their own”. How can someone say something like that without thinking it may come across as a little thoughtless given the context?
We need to challenge ourselves to question anything that we see as an institutional practice as it’s easy to turn a one bed flat in to an institution if we create a series of rules and systems by which someone needs to live by.
This was illustrated nicely for me by a man who lived in a supported living service who was questioning with me why his support staff insist on him doing the laundry every Wednesday morning without fail. He felt it would be much better to do it when his laundry bin was full.
His support staff no doubt thought they were doing a good job but they were living by their rules, not supporting that man around what he wanted to do.
Another incident with the band always sticks in my mind to. We were playing a big local venue to launch a new album. Simon, our singer, had always harboured this dream of people throwing underwear at him during one of our sets and so his staff team decided to make that dream come true as a surprise.
The whole team (some who were supporting his house mates at the gig and others who had the night off) came along with a bin bag full of pants and bras which got lobbed at Simon throughout the set. He had no idea that was going to happen and whilst putting them all in distracted him from the job of singing it was a lovely moment. It showed how his staff team had great love for Simon and wanted to support him to have a memorable night.
Their excellence went beyond this though and their attitude when we were on the road was always that they were their to support Simon, and knew that might mean not getting home until 3am sometimes. Great staff are out there as are great support providers.
Why are adults being given a bedtime?
It’s great that this inquiry has been published. We really need to challenge the practice of giving adults bedtimes. It is infantilizing and de-humanising and is going to contribute to poor mental, and physical health, for the people we’re supporting. In my mind having an imposed bed-time should be seen as a safe-guarding issue that needs to be discussed in the context of all the possible negative impacts it may have on an individual.
What does choice mean?
If people really choose to go to bed at 8.30pm that obviously is totally their choice but it’s too simplistic, and convenient, to say that without fully considering the context that people live in, the systems, rules and practices of staff that may mean there is not really any other choice.
How can we support people with learning disabilities to be citizens, active in their communities, if they’re denied the right to take part in the social activities that many of us take for granted.
At the heart of everything we do as a charity is the concept of supporting people to make real choices about the way they live their lives. Even though we’re called ‘Stay Up Late’ we don’t actually mind what time people go to bed, as long as they really are making a choice about it. We just thought that ‘Choice and Personalisation the Charity’ didn’t have such a ring to it as Stay Up Late!!
And to answer the question asked by The Clash ‘Should I stay or should I go?’ I always say there’s two main reasons why I’d leave a night out early:
- Because I’m tired, or have to be up early the next day
- Because the band’s rubbish
Never because I’ve got someone telling me they’ve made up some rules that I need to live my life by.
(Paul Richards @heavy_load – is the director of the charity Stay Up Late which also started the Gig Buddies project).