My Own Front Door and the living flower

One of my favourite quotes comes from one of Karl Marx’s early works: “A Contribution to the Critique of Hegel’s Philosophy of Right”. I first remember reading it in the early eighties shortly after I’d returned from Vienna and I think it’s fair to say that it shaped and continues to shape my approach to pretty much everything.

Criticism has plucked the imaginary flowers on the chain not in order that man shall continue to bear that chain without fantasy or consolation, but so that he shall throw off the chain and pluck the living flower.

Beneath the flowery language, it seems to me that it’s about the importance of criticism or critique in helping us to make sense of the world in which we live. And whilst the initial focus of Marx’s use of the analogy is on religion, the principles apply to all forms of social inquiry. And the thing that I like best about it- is its optimism. We don’t critique the world we live in so that we can endure it, we critique the world we live in so that we might make it a better place. This principle applies to everyday things and ordinary lives, as much as it applies to economics, law and politics.

For those of us fighting the discrimination that confronts people with learning disabilities, the chains take a number of forms, as do the imaginary flowers that hide those chains. Here in the UK and probably in most of the advanced economies, the chains are lower life expectancy than their peers, commodification, poverty, hate crime and abuse, indefinite detention/treatment and sometimes death at the hands of those who are supposed to provide care and support. And in-order for this disadvantage to be morally defensible in our “caring” society; these chains are held in place by a whole garden full of imaginary flowers. The tulip of complex and different, the lily of a diminished human rights and the rose of cost and best value. All fertilised by governments stating that they have spent billions on the care and support of people with learning disabilities and that we are a country that respects the rights of all its “vulnerable” communities, and in that way the chains of discrimination are held fast, and the illusion is sustained.

But for those who care to look we know that the life expectancy of people with learning disabilities is years lower than for their peers; we know that they are unlikely to get a job and we know that our prisons have significant numbers of people with learning disabilities in them. Just as we know, that despite the rhetoric of successive governments, change is either illusory or painfully slow.

And because we know, we fight to tear away the illusion and expose the chains of discrimination for what they are; and at the moment thanks to Panorama and their exposure of the abuse at Winterbourne View we are in the middle of one of those rare occasions when a government has committed itself to change, and Transforming Care is that commitment. The question is, does Transforming Care represent a genuine attempt to change things or is it just a gesture, another bouquet of imaginary flowers with which to hide the chains of discrimination and inequality?

The interesting thing about that question, is that even the government that commissioned Transforming Care probably doesn’t really know, if what it commissioned, was a genuine attempt to transform the system or a politically necessary response to appalling media coverage. If you look at the data in my last blog on how Transforming Care is being implemented in different areas; what is clear is that its successes are as much dependent upon the commitment of local areas as they are on the directives of national agencies.

So, I guess the answer to the question: Is Transforming Care another bouquet of imaginary flowers or a genuine attempt to nurture change? Would depend on the commitment of the people in your local area and how willing they are to change the way in which they do things. It will also depend on the ability of all concerned to imagine creative solutions to the problems that they face. Their ability to move money around the system and their willingness to accept challenges to the way in which things are currently being done.

As families, practitioners and activists we all play a role in this, and we have to ask ourselves what kind of role we want to play in whether or not Transforming Care delivers. Are you a practitioner or civil servant waiting for the day that the latest policy fad has passed you by? Or are you somebody who stands on the side-lines observing the efforts of others, pointing at the chains and everything that is wrong, waiting for the day that it will fail? Are you indifferent or do you want to play a part in making it as good as it can be?

The political reality of our times, is that Transforming Care is likely to be the best opportunity that we will get, at least for a decade, to improve the lives of people with learning disabilities and/or ASD. It isn’t just the government’s responsibility to make it work; believe it or not they really don’t have that much direct control over the way in which things are done in local partnerships and agencies. But each one of us can make a difference. It doesn’t matter who you are, if you want to play a role in making it better than it would have been, you can.

This coming January a group of us are going to be launching My Own Front Door, we want to use it to bring together the work of everybody and every organisation who is working to improve the lives of people with learning disabilities and/or ASD. As one part of that, we will be creating 48 sub-domains or mini-websites, one for each of the Transforming Care Partnerships so that people with learning disabilities, their families, practitioners, organisations and researchers can share the work that is being done in their area.  In this way we can challenge those who are waiting for Transforming Care to pass them by and provide an opportunity for those of us who have grown tired of raging at the chains, to nurture the living flower.

If you’d like to be a part of that get in touch with us at: contact@myownfrontdoor.net

 

Advertisement

The bungalow at the end of a path.

I was listening to a practitioner a while ago, who was talking about a person with a learning disability who lives in a bungalow at the end of a path, far away from the main buildings of an inpatient hospital. They are there because they are deemed to be too great a risk to themselves and to the wider community. They are there because they have been sectioned under the Mental Health Act. As far as she knew that individual, that person never left the bungalow, never received visitors and had been forgotten by the system. It reminded me that for every parent that is fighting to get their son or daughter out of one of these institutions there are many who are not or cannot.

There is no judgement in that but it does give some indication of the scale of the challenge that we face as we fight to change the system that places people in inpatient hospitals far away from their communities.  Because as hard as it is to get a person out of an inpatient hospital when they have somebody advocating for them, that challenge is so much greater when they have no-one but the system to struggle for them. And how realistically can they expect the system, that put them in the bungalow at the end of the path to free them, when peoples’ attention and empathy is focused elsewhere.

Whilst we rightly focus on the stories of individual people and the campaigns of their families; permanent change will only really come about if it happens for everybody.  As we have previously argued, the current inpatient system has effectively allowed people with learning disabilities and/or ASD to become commodities in a healthcare system that has often been shaped and structured by the needs of the – for profit independent sector –  rather than the needs of individuals. Despite this structural issue, an issue that stacks the system against the rights of people with learning disabilities and/or ASD, things are beginning to change and if we are going to change this system it is important that we recognise where progress is being made.

The graph above shows the numbers of inpatients for the different Transforming Care Partnerships for the period between July 2016 and May 2017. The statistics are taken from the Assuring Transformation data releases. The thing to look for, are the columns that slope from left to right. Where this is happening, it shows a reduction in the number of inpatients for a given TCP for that period. Looked at in this way we can see that progress is beginning to be made across a number of the TCPs, although not all. The strongest left to right slopes and therefore the greatest reductions in numbers are seen in the Fast Track Partnerships. This is perhaps unsurprising, they will have received the most funding and will have had more time to bring about change. The best examples of these appear to be Cumbria and North East, and Manchester. It also indicates that other partnerships such as North Central London, and the Sheffield, Doncaster, Rotherham and North Lincolnshire TCP are starting to show reductions in inpatient numbers. When taken together it is probably fair to say that Transforming Care is starting to make a difference as can be seen in the graph below – which shows the reduction in the overall number of people with learning disabilities and/or ASD in inpatient hospitals since Transforming Care started in 2015.

These are relatively small steps but I think it is fair to say that in some parts of the country Transforming Care is beginning to make a difference and now three hundred people are back in their communities. But there are still too many and it is likely that the majority of the people who have been able to return, will have benefitted from higher levels of transformation funding, and the systemic improvements that have come with a number of the Transforming Care initiatives such as CTRs and STOMP.

We also need to remember that many of the people who have returned to their communities will also have been supported in their journey, by families, who will have fought tirelessly to get them back to their homes and to keep them there. In many ways, it’s probably fair to say that this reduction in numbers represents the “relatively” easy wins, although nothing about this will have seemed easy to their families and to the many who continue to struggle.

What is clear is that the struggle to transform the care and support of people with learning disabilities and/or ASD has a way to go, and there are undoubtedly many who think that the progress has not been fast enough – and it hasn’t – but some things are starting to work. And if we want to change anything it is important to acknowledge the things that are working, just as it is important to recognise and challenge the things the things that aren’t. Because if we don’t the people who are fighting to make the system a better place will stop trying and there is a person detained in a bungalow at the end of a path who will never get home.