Embracing Failure and Changing the System

I was talking to my sister the other day about being a parent. About how it doesn’t really matter how hard you try to get things right the only inevitable thing about parenting is the amount of stuff you’ll get wrong. And all you can do is your best and it doesn’t matter how many books you’ve read or classes you’ve attended, we will all make mistakes and the harm we do, or don’t do, in making those mistakes, will so often simply be a matter of fortune or a function of the speed with which we recognise or admit that we’ve got something wrong. And it struck me that there are parallels in that.

There has been a lot of discussion recently, some of it involving me, about the actions of powerful organisations working with autistic people, and people with learning disabilities. And I’ll be honest, it’s a subject around which I feel particularly torn, and around which I am particularly inconsistent. On the one hand – in a system that appears to systematically function to undermine peoples’ rights and well-being – it would be wrong not to hold the most powerful organisations operating within that system to account for their failings. On the other hand, I am uncomfortable with the idea that an organisation has to be perfect, or not guilty of certain of certain kinds of mistakes, in-order to be viewed as a good and approved of organisation.

In truth there are no perfect organisations, just as there are no perfect parents. At one time or another every single organisation that works with autistic people or people with learning disabilities will harm an individual, or individuals, in their care. The thing that will differentiate between them, is the willingness to search for their failings and speed at which they recognise that they have got something wrong.

But unfortunately, there are some organisations that are totally indifferent to the idea that they might be more effective if they did somethings differently. Or that the unshakeable faith they have in the way that they do things may actually be harming the people they are meant to serve. Yet even these organisations will be full of people who care and who fervently want to do the right thing. In contrast to this there are other organisations who will treat every mistake as if it were a wound inflicted upon a person they love, and whose instinctive response to failure is to embrace and protect the well-being of the people in their care rather than the reputation of their organisation.

In one of my recent tweets I asked if people thought it was possible to change the system without Mencap. There were a range of responses, most of them negative with some people thinking (including me) that they would never change and that their dominant position within the system would need to be replaced. And others who felt that they would be more responsive and more able to advocate for people with learning disabilities if they separated their campaigning activities from their work as providers. It’s likely that either of these options would have a significant impact on our collective ability to transform the current system of provision and with it the everyday lives of autistic people and people with learning disabilities or difficulties.

But the reality is that in its current form, Royal Mencap is an organisation that has a dominant position within the sector and an unshakeable faith in its current strategies. An organisation that has systems in place to learn from its mistakes without the compassion needed to admit to them. It is an organisation that will campaign for and support individual families, whilst at the same time it is unable to challenge government because of its role as a provider and its dependence on local and national government budgets. And because of that dependence on government, because of the failure of its leadership to recognise and embrace the mistakes they are making, ultimately Mencap will fail the people they are meant to serve and they will fail to force the change we need. Which is a shame because there are millions of people with learning disabilities and thousands of employees and supporters who deserve so much better.

Can we change the system without Royal Mencap? We can but if recent history is anything to go by they’ll try and take credit.

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Does it make a difference?

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.