It’s been over a week now since we launched Rightfullives.net and I think it’s fair to say that things have gone pretty well. The site launched on time, we had well over 30,000 page views in the first week, it didn’t crash, people seem to like it and most importantly, for me at least, it does justice to the amazing exhibits and contributions that people have sent us. Not bad on a budget of £0. But a couple of nights ago Mark Neary went and ruined it all 😉, he wondered on twitter whether or not the site would make a difference and there is a part of me that wonders if he may have a point. Frankly, the system is so intransigent, so good at exploiting the good will of people who are trying to make a difference, so skilled at the dark art of insincere collaboration that it’s difficult not to wonder. But deep down, in the end the optimist in me refuses to let go.
On the surface Rightfullives is about the human rights and the humanity of autistic people and people with learning disabilities or difficulties. When we put out the call to action this was the theme that we invited people to contribute to. It’s a subject that speaks to the experiences of thousands of people and their families, and to many of the practitioners who work with us. In this, I believe that Rightfulllives helps people to raise important questions about the status of their rights and whilst we cannot know where that discussion will lead, the fact that it acts as a platform for that, matters. But I think that Rightfullives matters for other reasons and please excuse a bit of navel gazing while I explain why.
About 8 years ago now I began work on a full-time PhD at Brighton University. The title of my research proposal was “Representing the voice of severely learning and communication disabled children and young people” and the purpose of the project was to research and represent the communication and experiences of people with severe learning disabilities. The idea was, that I’d use a multi-media approach to find innovative ways of representing those experiences and central to the project’s method would be the “knowledge and experience of the people who know the young person well”.
After about 14 months the project still hadn’t gone to ethics. Difficulties in navigating an ethics process that was tightly shaped by the requirements of the Mental Capacity Act meant that I spent an inordinate amount of time trying to construct a consent process that fully respected and supported peoples’ ability to make their own decisions, in a system that tended to want to see capacity in a very black and white fashion. People either had the capacity to consent to research or they didn’t. Anyway, in the end my responsibilities as a carer, stress and a discomfort with certain aspects of academia meant that I walked away from the PhD although I’m not sure I ever really walked away from the project.
Fast forward to three years ago when Mark Neary and I met at a Learning Disability Today Conference and it was there that we first had the idea of creating an online conference/exhibition that would be accessible to people with learning disabilities. For a long time it remained just that, an idea. 7days of Action and A Trade in People came and got in the way of the idea, and in the aftermath we all fell out so it wasn’t until some-time early this year that the idea for an online exhibition was re-suggested – probably by Mark – around the ever relevant theme of human rights.
Since then the idea would begin to take form, shaped as much by Julie Newcombe’s diplomacy and compassion; as Mark Neary’s belief in the importance of human rights and the struggle for people with learning disabilities to be recognised as fully human; and my semi-subconscious wish to find ways of representing the experiences of people with learning disabilities. One of those occasions where individual motivations of compassion, rights and voice coalesce into something more than the sum of the parts.
But will it make a difference? When struggling to change a system that seems to have the inertia of a super tanker, will anything, that any of us do, actually make a difference? Whether you are talking about Rightfullives, or the continued efforts of organisations like Respond and Bringing Us Together, to keep making the case for partnership working and collaboration. Especially when we ask that question in the context of the data that the BBC published on the significant rise in the use of restraint in NHS Inpatient Hospitals and the harrowing detail of File on Four’s – “Transforming Care – is it working?”
The honest answer is that we don’t know. We don’t know if Julie’s compassion and Mark’s faith in the humanity of the legal system will ever be rewarded. We don’t know if Katie Clarke, Noelle Blackman and the hundreds of other people who work in this field, will get the commitment that they deserve. And for that matter we don’t know if Anne Webster, who has worked tirelessly on behalf of people with learning disabilities for years and her relatively new apprentice Ray James and everybody else working on behalf of people with learning disabilities at NHSE, will ever get the support from Simon Stevens and Matt Hancock that they are probably fighting for.
But Neil Crowther wrote a blog a while ago entitled “Moving Beyond A Human Catastophe” and whilst I didn’t agree with all of it, I did really like the ending:
So, in sum, I would advise that our next steps should involve:
Looking forwards, not back…
…Advancing solutions, not just highlighting problems
Putting disability at the heart of the debates shaping our collective future
Developing a positive story of change
And striving to ensure that hope wins over despair.
Rightfullives is our contribution to that. We hope it will help people to tell the stories that are hard to hear, and it will help share the joy and inspiration that is at the heart of so many people’s lives. And to ask again will it make a difference?
I don’t know – maybe we are asking the wrong people – maybe we should ask Ben and Paulette and Alexis and the guys from Heavy Load or maybe we should just listen to what it is they’ve got to say because from what I’ve heard so far, there is joy and inspiration and hope in that.