​Being person-centred in a time of the cuts

Person centred approaches have been at the heart of policy for disabled people with learning disabilities in the UK since 2001. In recent years many services have been cut; leaving many people with learning disabilities isolated and without key services. The time is ripe for reconsidering what person-centred means in practice.

Person centred approaches have been at the heart of policy for disabled people with learning disabilities in the UK since 2001. In recent years many services have been cut; leaving many people with learning disabilities isolated and without key services. The time is ripe for reconsidering what person-centred means in practice.

The key focus here is on the capacity, not the perceived deficits, of the individual at the heart of the plan. Issues of choice and control are important in person-centred approaches. But despite the focus on the need to listen to people with learning disabilities, many are not heard and some experience neglect and abuse.

Working with people with learning disabilities and their allies has made it very clear to us that we need to promote an understanding of personhood that recognises vulnerability and interconnections in all our lives.

All of us rely upon the input of others to survive, that is to say, we are interdependent. Hence, being person-centred does not mean that people with learning disabilities, or anyone else, have to bear the responsibility of all making decisions about their lives alone.

One person centred approach that we discuss on humanactivism.org is that of circles of support. When this approach works it does so when the many skills of a number of people come together to support someone at the centre of the circle. Distributed person-centred approaches draw on the skills and perspectives from a number of people to ensure that the ambitions and aspirations of people with learning disabilities are addressed. Being person-centred is not about isolating people. It involves promoting a person’s social network, enabling them to plug into a community where they are valued as human beings in their own right. Our anxiety is that any attempts to put into practice the philosophy of person-centredness risks being undermined by austerity.

Invisible Britain, Sleaford Mods and disability activism

Invisible Britain is a documentary film currently being screened around the UK, that follows the Nottingham R&B Punk band Sleaford Mods ‘on a tour of the UK in the run up to the 2015 General Election, visiting the neglected, broken down and boarded up parts of the country that many would prefer to ignore’. And for once disabled people are up close, personal and present in film documentary – not as objects of curiosity – but as activists responding to austerity.

Invisible Britain is 'Part band doc, part look at the state of the nation', the documentary features individuals and communities attempting to find hope among the ruins, against a blistering soundtrack by Sleaford Mods'. For those who don't know them, Sleaford Mods are a fantastic politicised band whose music has been keenly taken up by fans of all ages. Glib depictions of the band include John-Copper-Clarke-meets-The-Streets and The-Digital-Sex-Pistols. But they are much more than this. Their music is joyful, funny, angry and political, all in equal measure.

Invisible Britainintersperses band footage with stats and stories of the impact of the cuts on working class communities the length and breadth of Britain. This makes for harrowing viewing as we are reminded about the very real impacts of the Bedroom Tax and moves from Incapacity Benefit to Employment and Support Allowance. The extreme stress caused by these two changes to welfare has been blamed for a number of high profile suicides on the part of disabled people.

But Invisible Britain also gives us grounds for optimism: not least through the representation of disabled activists, set against the visceral soundtracks of Sleaford Mods, as these activists use the film to articulate their views against austerity. Space is given in the film to the input of Disabled People Against the Cuts whose pioneering work ensures that the lives of disabled people are widely acknowledged by the media.

Invisible Britain is an important counter-narrative to the usual disability-as-curiosity served up on mainstream TV. Disabled people are at the heart of numerous contemporary campaigns against austerity; not least because disabled people bear the brunt of welfare reforms. And if we want to find alternatives to austerity Britain, then disabled people and their representative organisations are leading the way. In the words of the Sleaford Mods 'You better think about the future': and the future is disability activism.

Betwixt independence and dependence

These austerity times seem to place onus on self-sufficient and independent citizens taking responsibility for their selves and their families as government and welfare services roll back. But working with people with learning disabilities and their supporters has convinced us that we need to be talking about interdependence. But what does this five syllable tongue twisting word actually mean?

We all want to be independent. And being independent is a human goal. Many people with learning disabilities desire independence. This is completely understandable when society and history have viewed disabled people as only dependent. While we recognise that independence is desirable we have learnt in our research about the importance of interdependence:

  • Interdependence underpins all human relationships.
  • In order to be human we need others to recognise us as humans.
  • We progress through life by being dependent upon one another: and this interdependence is a hallmark of what makes us human.

Interdependence refers to those times when we depend on others for support and those others depend on us for support. Support does not mean that there has to be an equal flow of resources. We might support others more than they support us. This might change over time. But the fact that those others are there indicates that we are reliant upon them to live. Interdependence is part of the fabric of society. It is about time we started celebrating our reliance upon one another.

A deadly mix: The Doctors strike, austerity and disabled people

Earlier this year we saw the junior doctors striking. What does this say about the current state of the NHS? The marketisation and dismantling of the NHS has been a key mark of policy at least since New Labour. But the current battle between junior doctors and the government relates to new contracts that doctors suggest will make their jobs more pressured thus lowering standards of patient care. But we have been before.

The recent JusticeforLB and JusticeforNico campaigns have drawn attention to the myriad of ways in which people with learning disabilities are being failed and neglected by our systems of healthcare. One of the recurring criticisms relates to the farming off of whole sections of the NHS to private providers who, inevitably, are expected to balance 'value for money' against 'the quality of patient care'. Some would argue that in times of austerity we should expect the private sector to fill the spaces left by a radically receding health and welfare system. After all, aren't we all neoliberal now? And there are of course many policy makers and service providers who now accept privatisation as the primary means of service delivery. Yet, it is impossible to deny the human costs that occur as a result of changes to healthcare and welfare provision.

  • A suicide letter, written to the health minister, left by a junior doctor who felt unable to cope any further in their role [1]
  • The deaths of people with learning disabilities as a result of poor service provision, institutional neglect and system failure [2]
  • Changes to disability and employment benefits that have led to a number of suicides on the part of people who felt bereft without welfare support [3].

Some might say that it is an imperfect science to suggest that a rise in patient/staff deaths is positively correlated with the increased privatisation of healthcare. However, it would not be pushing the argument too far to conclude this; that these times of austerity and marketisation are deadly.