It’s just over two weeks since the famous or infamous Bubb’s breakfast blog. Enough time to reflect, take stock and plan. In that time, there has been uproar, distress, indignation, hilarity, ridicule, collaboration and concern.
In our reflections at CHANGE, we too have been horrified at the casual way that people with learning disabilities have been left out, but we are also intrigued. Why is there so much fuss?
From the point of view of people with learning disabilities at CHANGE and of us as an organisation, this happens all the time. What’s so different this time?
On June 26th we co-hosted a national event with the children’s rights charity Lumos, to support people with learning disabilities to meet together, share their outrage and come up with a way forward to shut down institutions by developing Proposals to take to Government. One hundred people with learning disabilities involved in self advocacy groups, came from across the country to the event: Our Choices, Our Voices, Our Freedom. They were powerful, wise, intelligent, thoughtful, emotional and they know. They came up with a way forward, they developed four big ideas; Proposals, in a day.
It takes people who don’t have learning disabilities years to come up with ideas, policies, people change, new policies are written, allegiances formed, deals made, doors opened and closed, more policies are written, different groups with different names, but we are still in the same mess and still people with learning disabilities are not at the centre.
It’s intriguing that so few people have contacted CHANGE to find out what went on THAT day. What did those 100 people with learning disabilities say, think, feel, experience? What do they know? Why the silence?
Does Bubb’s breakfast not happen all the time, all over the country? Different organisations, different people, but always the same starting point – we know best, we can decide, we’ll include people with learning disabilities once we’ve set things up, if they’re lucky.
People don’t usually blog so openly about these meetings, allegiances, proposal. Maybe Bubb has helped us all to see what really goes on. People with learning disabilities are not just excluded from the big stuff but from the everyday stuff, literally everyday, day after day….what to eat, what to wear, who to live with, where to live, employing their staff, meetings continue to happen about people with learning disabilities, not with them. It’s so easy to do, so acceptable, so normal. Who is challenging this?
Maybe Bubb’s blog gave us all a flavour of what it feels like to be left out of something we all feel deeply and passionately that we should be included in. This might actually be a good thing. Maybe what really upset us so much about Bubb’s breakfast is that we were not one of the chosen organisations cosily sat there making plans about people with learning disabilities lives.
People are shocked that Sir Bubb’s background knowledge is not embedded in a knowledge about people with learning disabilities. Yet I have spoken to a number of commissioners who are commissioning easy read information without a clue as to what easy read means, why it’s important for people with learning disabilities and what high quality easy read information looks like.It is never quality checked by paid independent people with learning disabilities. And yet it is so important. If information gives us power and knowledge and control over our lives what are we doing? Where is our responsibility to share our power with people with learning disabilities?
Why is there such uproar? Is it because Sir Bubb so openly stated what was going on? Maybe it’s the opposite of what’s being said about secret breakfasts behind closed doors, maybe Sir Bubb is saying it more openly. Maybe Sir Bubb is one of the most transparent of all of us.
We are sending the Proposals from the Voices Choices event out for everyone to see. It is the collective and true voice of people with learning disabilities, wise, thoughtful collaborative and knowledgeable.
Let’s try to really challenge ourselves; people with learning disabilities really do know. The Proposals involved people with learning disabilities from 30 self advocacy organisations working together. No one took the lead.
If we really do think that people with learning disabilities know best what they want, then we can turn things around. Let’s support their voices and their knowing of what a better way forward might look like…for them. We are taking the Proposals to government. Norman Lamb, the Care Services Minister, is hosting a Summit meeting on September 3rd and we are taking the Proposals there. We will meet the Minister, Norman Lamb, The Chief Executive of NHS England, Simon Stevens, Carolyn Pearson from the LGA, Andrea Sutcliffe from the Care Quality Commission,Jon Rouse from the Department of Health, Gavin Harding from the Joint Improvement Board,Olivia Butterworth, Head of Patient and Public Voice Team, Scott Durairaj, Head of Patient Experience,Duncan Selbie, Chief Executive of Public Health England and others. Now surely that says something of a willingness from the top to meet the people at the bottom and listen and make a commitment to start to work together to change things.
Let’s all work together to be the change we want to see in the world, let’s all stand behind the voices and the knowledge of the 100 people with learning disabilities who developed and decided these Proposals as a way forward.
Please click on the link: Summit Meeting below, to see the Proposals, we would be so grateful if you can have a look and send your responses to: firstname.lastname@example.org by Wednesday August 20th.
In particular we would like you to tell us:
1. Do you agree with these four Proposals as a way forward?
2. Do you agree with how we suggest that they can be achieved?
3. Do you have any other ideas for how we can achieve the proposals?