13th November 2019
Coin Street Neighbourhood Centre, London

It was a busy and fascinating day, with findings from the research study, stories from participants, animated discussion and creative thinking, 'Q and A' s , a film premiere, people meeting for the first time, bubbles and wool, much coffee and tea, a tasty lunch, and ending with a snow ball fight!

Matt and Sally (representing England and Scotland, respectively) kicked off the day, welcoming everyone to the event and the Coin Street Neighbourhood Centre (top marks for a great room and lovely, accessible venue), and saying a few words about what the research project has been about from their perspective as Advisory Group members, including the need for support when living independently, problems with benefits, and having to make their voice heard and stand up for themselves.

Andy Power (Project lead) then set out the background to the project, focusing on the move towards personalisation and self-directed support, and prevention and asset-based approaches, for social support provision for people with learning disabilities. But that this is taking place within a context of severe cuts to funding, services and buildings in local areas. People with learning disabilities, families and local organisations are taking on the responsibility of care and support. The research wanted to know what people are doing to respond to this new situation. What we found out is that more and more people with a learning disability are 'self-building' their lives - putting together the 'building blocks' of activities, resources and skills to make meaningful lives. It was a theme we would return to throughout the day%u2026

Some of the people who had participated in the project then raised issues that were important to them in self-building their lives: Kimberley spoke about her involvement in a self-advocacy group, and the volunteer work and peer learning she does; and John Paul spoke about the importance of his involvement in a disability campaigning organisation, organising events and providing information for people to get out and do activities.

Andy Coverdale introduced the themes in the resource pack: planning is fundamental to people's lives (planning for the future, as well as for the week ahead), and requires information. This planning provides the platform for people to then be able to manage their everyday lives, including getting around, and living independently, and in turn to participate in meaningful activities, which could be volunteering, leisure etc. These are the 'building blocks'. In this new world of self-building, it is vital that the many different people and organisations involved in people's lives communicate with each other - family, carers, supporters, peers, local authorities, providers, and local organisations. This network is the 'mortar' which holds the building block together.

Melanie Nind emphasised that whilst planning is essential, and managing your everyday life is crucial, there is more to life than this! The third building block - doing meaningful things - is what life is about, feeling welcome, belonging, being in a group, meeting new people, campaigning. Self-building your life is about a life that is good, meaningful and fun. But, of course if a building block is missing, especially the support of self-advocacy, peers and friends, then self-building becomes difficult or does not happen at all. It can be a fragile, unstable and uncertain experience.

Hannah then turned on the bubble machine - the bubbles representing the hope of meaningful lives, but also how fragile this can be.

We then broke for lunch, with much chatting and meeting of new people, and learning from each other. In the afternoon's first session, the attention switched to the organisations we had worked with in the research study. Kimberley asked Morag some questions about the 'Bookshop Project' in a rural area of Scotland - Morag told us about how she started it because of the lack of volunteering opportunities for people with a learning disability in the area; her aspirations are for people to learn the skills to be able to take up other volunteering and work opportunities; and the challenges of sustaining funding. Alex asked Sally about the 'Good Neighbours' project she is involved in an urban area in Glasgow - the project makes connections between people, preventing people becoming isolated. Matt asked Clare about the self-advocacy organisation she works for - Clare said that self-advocacy is vital, as it empowers people, gives them influence and makes people listen; but for self-advocacy to be effective it needs time and a safe space to happen, for people to build networks and skills; the governance of user-led organisations, and tendering for contracts for self-advocacy work, are major challenges. Andy Coverdale summed up the session with some of the main themes from the study related to organisations, including how starting up can be a risk, organisations need to be adaptable (but need training and learning to do this), travel can be a real barrier, especially in rural areas, there is a huge reliance on volunteers, and some try to get disabled people involved in management, steering groups etc.

Three made-up profiles of people with learning disabilities - Combi, Mixie and Flexi - based on the findings from the research were shared, and those in the room asked to discuss and suggest how local organisations could help them to make effective choices and seize opportunities in their local area - to self-build their lives. Again, it was clear that social groups, friendship groups etc. are the essential first stage towards self-advocacy. Hannah passed a ball of wool around the room, to connect everyone together in a weave of threads, to symbolise the importance of these social relationships and networks. Hannah and Mel then summed up the learning that was taking place for individuals and organisations as everyone negotiated this new landscape of care and support. Lively questions and discussion rounded off the session.

To round off the event the Rocket Artists (from Brighton) presented an excellent illustration of the day, and then it was time to say 'thank you' to everyone who had attended, to all those who had shared their experiences, and to the research team. Finally, we asked people to write or draw what they thought of the event, and then to scrunch up the piece of paper - this is when the 'snow ball fight' began!

We will be adding more photos and feedback from our delegates in the next few weeks.