Save Self-Advocacy!

The last 50 years has witnessed the global growth of the self-advocacy movement. This is a political movement set up by people with learning disabilities so that they can collectively agitate for their rights.

Self-advocacy is an international movement with incredible potential to promote the aspirations of people with learning disabilities. This movement has helped push politicians and policy makers to ratify the United Nations Convention on the Rights of Disabled Persons.

Our research has uncovered worrying decreases in the amount of funding that self-advocacy groups can access and has collected many stories of groups folding in a time of austerity. We seek to raise the profile of the importance of self-advocacy groups.

Please visit our Help and Support pages to learn about how important self-advocacy is to people with learning disabilities and their families.

Have you got the capacity to understand (the) mental capacity (act)?

The Mental Capacity Act (MCA) is an important piece of legislation that can help people with learning disabilities to live good lives. Recently, there has been a lot of debate about its potential. But what about is potential use in the lives of people with learning disabilities?

The Mental Capacity Act is designed to protect and empower individuals who may lack the mental capacity to make their own decisions about their care and treatment. It is a law that applies to individuals aged 16 and over. Examples of people who may lack capacity include those with dementia; a severe learning disability; a brain injury; a mental health condition; a stroke and unconsciousness caused by an anaesthetic or sudden accident.

However, just because a person has one of these conditions does not necessarily mean they lack the capacity to make a specific decision. Someone can lack capacity to make some decisions (for example, to decide on complex financial issues) but still have the capacity to make other decisions (for example, to decide what items to buy at the local shop).

Our research has found that:

  • The legislation is difficult for most people to understand;
  • Under the MCA, everyone is required to act in the 'best interests' of the person covered by the act;
  • In order to do this, people have to show why they have made the decisions they have;
  • We think a good way of showing how decisions are being made is a circle of support;
  • A circle of support comes together to support a person with learning disabilities;
  • The records of the decisions made in in Circle meetings are a way of showing how decisions have been made in the person's 'best interest';
  • Circles of support are an important way of enabling disabled people to navigate services and and to live a good life;

We are of the opinion that the MCA can help rather than hinder people with learning disabilities. Clearly, any piece of legislation that puts people with learning disabilities at the centre of decision making has to be applauded.

That said, we also need to be mindful of how we practically respond to the MCA. One starting point might be to consider Mental Capacity as a distributed phenomenon: our capacities are always influenced by and mediated through the relationships that we have in our lives. Circles of support are just means of promoting such relationships.

​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.