I’ve recently come across an interesting book that questions how much we take in, how much we see and understand of the immediate world around us. I love being outside, going for walks, growing vegetables and being in the wild, but I suddenly realised how few trees I actually know the names of. How limited my knowledge is of birds and wild flowers. How many times I go for walks and don’t actually see what is right in front of my eyes. Suddenly I looked up and saw the vast beauty of the sky!
I think this happens to us all the time. What are we failing to see that is happening right in front of us? How often do we fail to spot different ways, different opportunities? Sometimes the answer is right there, right in front of us, but we fail to see.
Changing our ways of doing things and patterns in our own lives is often really hard challenging and frightening. We then take this fear and fixedness of change into our work. If the world around us is changing, then to be fixed and in control in some areas of our lives can feel great, necessary even, but what if it is at the expense of the people we are employed to make changes with and for?
It seems that there is something deeply fixed and rigid in how we work with and support and even see the potential of people with learning disabilities. How many times do we really have the courage to evaluate a service we are delivering? I think particularly with people with learning disabilities there is often a dogged determination to keep going, heads down, staying in control – unless of course something really huge and devastating happens like someone dies a preventable death. Then our shock and our outrage propels us to stop. Look. Try to change things. But within a culture of not-changing – of avoiding deep systemic change – then change itself becomes an overwhelming challenge and the temptation to play around the edges becomes too compelling.
Why don’t we stop and look, really look and see that some of the organisations that are already here are truly brilliant and inspiring. They have potential and hope to become the source and inspiration for change. There are many examples but I want to look at those organisations that are working within the grassroots of people’s daily lives.
We know and many people have written and documented the serious lack of funding for advocacy and self advocacy. We know there are many self advocacy organisations struggling desperately to survive. How can it be that the Rights based organisations that should and do play such an important role in the lives of people with learning disabilities are the very organisations that are struggling to exist? Organisations where people with learning disabilities feel safe. Organisations brimming with complex knowledge and understanding from the unique and precious expertise that can only come from lived and real life experiences. Organisations we are all saying should be here above many others, organisations representing the strong and passionate collective voice of people with learning disabilities. These are the organisations who are folding while we stand by. How on earth can this make sense? Why are we allowing this to happen?
The changes to the Care Act on advocacy are very welcome, however in order for it to work, we need to work in relationships of equal paid partnership with self advocacy organisations with local authorities to change their priorities and ways of thinking.
CHANGE has been working with self advocacy groups across the country training and empowering people with learning disabilities on how to quality check accessible easy read information that is used and developed by health and social care organisations in their regions.
We are working with many brilliant, determined, knowledgeable, awesome self advocacy organisations, supporting them to use their knowledge and expertise and connect with each other, us and you. We are trying to bring them and their expertise into the light. We’re supporting and working with these self advocacy organisations to become without exception the heart and the leaders of what is happening for people with learning disabilities both locally and nationally.
CHANGE is working with self advocacy organisations to have a strong powerful collective voice that is heard and acted on. Many self advocacy organisations want to start to employ people with learning disabilities on a living wage. Employing people with learning disabilities to use their knowledge and expertise across services and be paid for it, properly paid, as we all are, many of us on high salaries.
Article 19 of the UN CRPD (United Nations Convention on the Rights of Persons with Disabilities) aims to remove all barriers to full inclusion and participation in society of Disabled People. It talks about a fundamental shift in the way we can achieve this by outlining a series of tangible obligations to achieve independent living and inclusion in the community. These obligations place disabled people, including people with learning disabilities at the heart of all policy making and decision making processes that affect them.
The recent Bubb report: Winterbourne View – Time for Change, focused on people with earning disabilities having choice and control. A powerful example of this is the Voices Choices Freedom event we organised with Lumos last June. From the event we took the views of people with learning disabilities to people with the power to change things at a Summit meeting hosted by Norman lamb and attended by many powerful leaders including Simon Stevens CEO NHS England. People with learning disabilities do know what they want and the biggest change would be for people with learning disabilities to be employed as peer support workers and leaders in their own services supporting each other. We’re working with NHS Employers and others,through the Summit meeting to take this forward.
There is an important and vital role that I believe is essential if we are to create a paradigm shift in the lives of people with learning disabilities, that self advocacy organisations must have. But to do this we need to question ourselves and the roles of the organisations we are representing, we need a collective courage and humility to question our own power and attitudes. And we need to step aside.
We need to start collectively thinking of how and where we can find the space for self advocacy organisations to take the lead up and down the country, so that they too can become sustainable, their knowledge and expertise paid for.
There are so many opportunities that would be transformational if we look and take courage to try a different way. We often talk about allowing people with learning disabilities to take risks, let us take the risk by giving up a bit of our own power and control.
Let’s work together so that this year we share our resources. Let’s work together to find the space that truly supports the voice ,the power, the money and values of the essential place that self advocacy organisations should and could have across the country.
If self advocacy organisations can be paid like all the other organisations to become the infrastructure and leaders that services must answer to, maybe this will create the sea change we are all desperate for.
Let’s work together to make 2015 be the year we find our collective courage and humility to make this really happen.
Shaun Webster, Project Worker International at CHANGE and a grandad with learning disabilities says: Some organisations are too scared to let go. Sometimes we feel like puppets and we don’t have the freedom to do things for ourselves with our own agenda. Let us do it for ourselves. Let us be leaders of ourselves and Peer to Peer support workers. You think we can’t do it but we can!