Sunday, 27 January 2013

Holocaust Memorial Day: Aktion T4

Today is holocaust memorial day.

On this day we remember the victims of the terrible Nazi holocaust.

So many millions died as dark ideas about race and genetics were taken to their logical conclusion.

It's amazing how few people know that the holocaust began with the slaughter of disabled people and residents of institutions and asylums.

They also assume that the people who carried out the 'euthanasia' (as it was called) were soldiers or SS, but in fact they were nurses and care workers from the institutions that had been charged with caring for these people.

That means people like me carried out these killings.

An ideology of  eugenics prevailed. This meant that people really believed that death was a 'kindness', preferable to the lives that disabled people led.

Eugenics was a set of ideas held not just in Germany, but in every country. These ideas, while officially discredited, lurk dangerously in many of the assumptions that society makes about disabled people even today.

Here's a short film made by disabled people that shows what happened in the 'Aktion T4' programme.
This hard-hitting play by Nabil Shaban was banned by youtube, but is still available on Vimeo:
Don't be a victim. Don't be a perpetrator. Above all, don't be a bystander.

Thursday, 24 January 2013

Loneliness and Social Isolation

Recently Homa Khaleeli wrote very touchingly in the Guardian about "Britain's Loneliness Epidemic".

Are we building a culture based on disconnection?
What can we do about this?
She pointed out how increasing numbers of people are feeling lonely, and that loneliness should be considered an indicator for society's health.
As this tide of loneliness increases, people are beginning to discover some of what David Pitonyak pointed out in 'Loneliness is the only real disability': In the absence of real, freely chosen relationships in people's lives, any benefits of health and social care interventions simply cannot be maintained.

 Loneliness has huge effects on people's health, and has huge costs to the NHS through increased rates of stress, cancer, stroke, dementia and heart disease that manifest among the lonely. Loneliness has a direct physical effect on the body, as well as affecting people's mental health. Lonely disconnected people are also less likely to get the best care from health and social care services, they have noone to advocate for them, noone to question and challenge, noone to boost their confidence to ask difficult questions.

Lonely disconnected people are also far more likely to become victims of abuse, both in the community and in care services. Their lack of social connection makes them vulnerable to hate crime and 'mate crime'. Social isolation and exclusion happens in rural communities, and in the middle of the city.

It's also clear that people are far more likely to feel lonely if they are elderly or disabled, or excluded from society because they belong to another oppressed, discriminated or excluded group.

Loneliness is therefore something that not only exists in every street in every town, it is something both health and social care services meet commonly in their everyday work, so often in fact that we stop even seeing it.

People who work in health services report people who repeatedly turn up at their GP with a new set of symptoms every week, people who fear the loss of community nursing services so much that they will deliberately exacerbate the symptoms they are receiving treatment for. These people often don't get much sympathy, they're called 'heartsink' patients, or branded as 'manipulators' and 'attention seeking'. Yet these are the desperate measures people will go to to alleviate their loneliness, a sign of how deeply their loneliness is causing them pain.

Yet the frustrating thing is that while these services may address the person's immediate diagnosed condition, thinking about how to address the person's social isolation is rare, in fact the way these services work often reinforces such isolation, in countless subtle and not so subtle ways. How much time thought and energy is actually spent in each social care service and with each person thinking about how to help people build relationships or to reconnect with their community?

I used to visit a building regularly. You would walk up a long path beside a building with boarded up windows that had been painted black, it looked like a deserted rotting wooden shell. Once you turned the corner, a 7ft high grey metal fence would meet you. On the gate in that fence was a sign. It read "social inclusion service". If they had tried to design a building to make it's occupants and visitors feel less socially included, I don't think they could have succeeded.

In Britain, social exclusion begins early in the lives of disabled people. Most people build their first connections at school, and by playing with their school friends after school and at weekends. Disabled people often get sent to different schools, often necessitating long travelling times. Opportunities to play outside in the evening are limited. Then what connections they have built up in local communities are torn away for 2 years while they attend 'residential colleges'. When they come back the work of rebuilding those connections can seem daunting.

In discussing loneliness, I've found some people like to divide it into two areas: loneliness; meaning the feeling of loneliness, and 'social isolation'; meaning the structural issues that prevent people from forming meaningful relationships.

I can see the precise academic logic behind this distinction, but I'm not sure whether in practice, the distinction is that useful, and I'm worried that it may even hold us back.

We tend to understand how to deal with loneliness in our own lives and in our own families and friends. If we got together in groups and thought about practical ways to help a person overcome loneliness, we could come up with quite a list. 

So many of us are deeply experienced in forming and maintaining relationships, and understand the joys and pitfalls they can bring. It is exactly these experiences we need to tap when we think about how to enable more people to form relationships and have better lives in the community.

But do the same exercise with 'social isolation' and we're likely to be stumped, or just come up with a list full of empty jargon words that contain no practical way forward (basically the same thing).

When loneliness becomes 'social isolation' it sounds far too big and complex to do anything about. Something for the 'experts' to deal with.  I also wonder whether loneliness is something 'we' are allowed to feel from time to time, but 'social isolation' is something that only happens to 'them' disabled and elderly people, the 'service users', a jargon word conveniently consigning thinking about that issue and action to resolve it to comfortably outside our own sphere of influence.

Of course we need to take action against the barriers that create loneliness at different levels. The personal level, the community level and the societal level. At each level we need to ask "are we making changes that help people form and maintain lasting and meaningful relationships, or is what we're doing preventing that?"

At a personal level, time spent thinking about a person's relationship circle and how to build it, thinking about using community connecting tools, action to build a circle of support, getting out there and creating opportunities to interact that make sense to the person, that reflect what's important to them, could all be valuable ways forward. Bob Perske has some great thoughts on this.

Ideas about building communities

At the level of organisations and communities, we need to rethink attitudes to risk, the architecture and furniture of buildings, the ways and opportunities our systems and structures offer opportunities to connect, whether staff understand their own role as 'community connectors', seeing connecting people as part of their individual and organisational purpose, seeing people's relationships as something to value and cherish and accepting that this can include loving sexual relationships.

At a community level the number of places people can meet and socialise is diminishing. Local pubs are closing, post offices, local shops, community centres, libraries. Shopping centres in decline as people stay at home and buy over the internet. The list goes on.

 In my area new estates are springing up, where they don't even have pavements. People who move in there are thus actively being discouraged from going out of their front door, walking around the neighbourhood, and perhaps meeting their neighbours!

 People are being encouraged to work from home - missing out on what the Americans call 'water cooler moments' the informal networking that makes organisations work better and employment a method of building relationships.

So  what are we doing to resist all this? What alternative forums for people to meet, talk, think and act together are springing up? Can we assist this? Can we create our own and bring people in? In America communities face very similar questions, and have developed what they're calling 'Asset Based' approaches. This work has led to developments like 'Local Area Coordination' and its 10 principles. The first, and key principle is:
"As citizens, people vulnerable due to age, disabilities or mental health needs have the same rights and responsibilities as all other people to participate in and contribute to the life of the community."

(Quote from

At a social level we need to start questioning the values and assumptions that are excluding people. Are we thinking too much about institutions, empires, interest rates, and not enough about actual people? Do our leaders consider how national policies might impact on the way people get to meet and spend time with each other?

Gay people don't have 'gay marriages' they have marriages. Disabled people don't in general have 'disabled relationships', they have relationships. Actions and strategies that enable more disabled, chronically sick and elderly people form more meaningful relationships are also likely to enable everybody to form more meaningful relationships.

Personal Budgets add a new layer of complexity to relationships, they enable an employer/employee relationship, which can get complicated when PA's are also people's friends or family. It will be interesting to see how PA's are used by disabled people in opening up their social lives.

Turning the rising tide of loneliness is a great task for the 21st Century. Building warm accepting inclusive communities is everyone's responsibility, and will lead to better lives for everybody.

If the disease is loneliness, then we are all the cure.

"Loneliness is taking a toll on our individual, collective and societal health, and those health consequences carry a heavy economic burden. Just as lonely feelings are nature’s way of telling us to seek out company, the problem of loneliness in society is a prompt to revitalise our communities, and better integrate their members."
Mental Health Foundation: The Lonely Society?

If you're reading this because you feel very lonely yourself, here's some advice from MIND on how to cope with loneliness.

Thanks to 'The Abundant Community' for the image of 44 ways to build community

Lost for words?

Nearly all these words are banned!
This entertaining programme "Splasho" tests everything you write to see if you’ve used the 1000 most common words or gone beyond that.

Very quickly you can feel frustrated that the words you need to express what you mean lie beyond the limit of what’s available to you.

Imagine how difficult it would become if this was just 500 words, or 50.

Thanks for sharing this with me Bernard!

Sunday, 20 January 2013

Improving this blog

As this is a brand new blog, I've still got lots of improvements to make to it.

If this blog was a house I'd just moved into, It would have had lots more visitors than I expected, even before I've got the carpet down or the teacups out of the packing cases. So that's motivated me to spruce it up.

I've made a few tweaks.

I'd like it to be very accessible and readable.

So I need your feedback.

Is the text the right size?

Is the background OK, does it make it easier or harder to read?

I've tried also to improve the sidebar - with some links to other blogs.

Are these the right blogs to link to?

Are there other blogs I should already know about and have linked to?

Am I covering the right topics?

What other topics would you like to see covered?

How else can I improve the blog?

What's working about it? What's not working?

I hope this blog will be a coproduction between me and its readers.

For that to happen, I'll need your feedback!

Click on the comment button to tell me what you think.

Saturday, 19 January 2013

Disability in Prehistory

In recent years archeologists have been unearthing remains that demonstrate that at least in certain prehistoric communities it was routine to care for severely disabled people. (Dettwyler 1991)(Tilley and Oxenham 2011).
Our picture of Neolithic peoples as 'savages' needs to change
Kristina Chew has summarised some of the fossil finds in this article:5 Prehistoric People 
  • 45,000 years ago, a Neanderthal, Shanidar 1, lived to the age of 50 in what is now modern-day Iraq though one of his arms had been amputated, one of his eyes lacked vision and he had sustained other injuries.
  • 10,000 years ago, Romito 2 lived until he was a teenager; his skeleton shows that he had a form of severe dwarfism that meant his arms were very short. He was therefore unable to live by hunting and gathering among his people, who “would have had to accept” what he could not do.
  • 7,500 years ago, Windover boy in Florida lived to the age of 15 though he was born with spina bifida, a severe congenital spinal malformation.
  • 4,000 years ago, a young woman from a site on the Arabian peninsula lived to 18. She had a neuromuscular disease, possibly polio, with very thin arms and leg muscles that would have made walking and movement extremely difficult. Debra L. Martin, associate professor of biological anthropology at the University of Nevada, Las Vegas, says that she would have needed “round the clock care.”

  • Read more:

    The latest find is of the 4000 year old remains from Man Bac in Vietman:
    This boy had fused vertebrae, weak bones and would have been unable to walk or use his arms from adolescence. The evidence shows that he had Klippel Fell Syndrome, yet he lived for another 10 years.

    Tilley says she knows of at least 30 skeletons “in which the disease or pathology was so severe, they must have had care in order to survive".

    Today many assert that the fact that poor sick and disabled people receive welfare support is a sign of Western ‘progress’ and ‘enlightenment’ as a society, or even a luxury we can now afford thanks to economic development (for example Zhang & Song 2012), that the right to support with health may even be a ‘Western imperialist’ idea (Matheson D. 2009).
    This fossil evidence of ancient welfare practices undermines such self-congratulatory assumptions.
    We can assume that life was tough for these communities, they faced predation from wolves and tigers, some did not yet have agriculture, and lived by gathering and hunting, the idea of a 'state' had not yet been thought of, though neither did they have bankers and multinationals demanding that society's resources should be directed at them.

    The resources they had were very precious to them, and they used them to make sure that every member of their community was supported to live as well as they could.
    When politicians start to use rhetoric about 'scroungers', 'skivers' and 'burdens' (and politicians of all the main parties are guilty of this) they show in many ways that our society values humanity less than we once did. When we segregate people, when we create disempowering places like Winterbourne View, when we invalidate people's voices, treat them as 'other' and fail to listen to what they're saying with their eyes, bodies and behaviours as well as their words, we show that we're not listening, not valuing, not being human,  
    It was the fact we valued all human beings that enabled our species to survive those tough prehistoric times and begin to build civilisation. But as I was asked on twitter recently: "Are we civilised now?"

    Friday, 18 January 2013

    Person Centred Thinking Tools

    There's been some debate recently about whether we should use 'Person Centred Thinking Tools'.
    It's been argued that the word 'tools' implies somebody doing something TO somebody. The person with the tool is the person with the power.

    There are several ways of describing what facilitators and coaches help provide:

    A set of tools; tools that champions can share with people, their staff and families.

    A set of skills; ways of thinking that are coached and practiced so regularly they become internalised, so that almost naturally in each new situation a supporter might ask themselves "What's important to the person in this situation, and how can I help them stay safe in a way that makes sense to them?"

    A set of approaches; values, attitudes, tools and skills all brought together in one bundle.

    There are good arguments for each of them, and I think it's absolutely correct to raise the risk of planning for someone, doing something to them, leaving them out of the planning process, exercising 'power over' instead of 'power with' that increases the person's 'power to', it's a risk we need to be aware of whatever we call what we do.

    I also remember the old one day Person Centred Planning 'Awareness' training that used to introduce people to person centred planning for the first time: It would tell you all about the values and outcomes of person centred planning. People would ask "That's really great, but what can I actually do to put this into practice?", the answer being: "go on the four day facilitators' course".

    Back then we had 'big' planning styles: styles that required a highly charismatic skilled facilitator (or two) who would gather everyone together and at the end of the day produce an amazing graphic representing the person and their plans.

    Problems with this 'big' approach are that in reality very few of us sit down and plan our whole lives over 1 day, we do plan our lives, but in a much more 'bitty' way, thinking about different parts of our lives at different times.

    Other problems with the 'grand plan' approach are that people tend to believe that the plan belongs to the facilitator, give them all the credit for its content, even when all the facilitator has done is skilfully reflect what they have been told by the person and their allies.

    People get frightened to change any detail without getting the facilitator back, they don't feel that they own the plan themselves, and often such plans ended up being folded away, and only got out for managers or on inspection visits.

    The deep thinking mindful inspirational facilitators with the power to help us take an eagle eye look at our lives and potential are always going to be thin on the ground, to reproduce person centred work at scale would require a very different simplifying approach.

    I remember the first plan I was asked to write. A wedge of paper too thick to fit into a lever-arch file was dropped on the desk in front of me. "Get that filled in, then send out questionnaires to staff and the family, collate all that information then hold a meeting". To accomplish this took the best part of six months, meanwhile the person was wondering when their life was going to change.

    That really was the pursuit of 'good paper' rather than the 'good life' as Michael Smull puts it, the ratio of paper + time to action was far too top heavy.

    The great advance was when brave thinkers smashed those early bigger tools into smaller pieces that many more people were able to use, and many more people were able to use much more quickly.

    It is far simpler for a person and their team to start with a one page profile, then a week or so later do 'working not working' then another tool depending on what the priority was in that person's life. A little bit of planning quickly followed by a little bit of action, followed by more planning, more action and even some learning. This 'deconstructed' set of smaller tools would enable me to plan my staffing one day, my garden shed the next, where I'd go on holiday, my evening routine or how to sort out my finances in different 'bite size' chunks.

    Then, even after a one day training people could go back to their homes or organisations with three or four things they could actually do under their belt: a staff matching tool, a doughnut, a decision making agreement, a communication chart. Things they could try out, for themselves and get a taste for what person centred thinking and planning is all about.

    We think of tools as things that 'experts' and 'professionals' use, but these days we also have DIY stores, where we can get simple tools that we can use ourselves, lend to our neighbours and friends, and never get back. (Till we go round to their house and 'borrow it back' - only to find they've done something with the tool that we'd never even have dreamt of).

    There's no reason why our tools cannot be used together in partnership with the focus person and their allies, to co-produce the floorboards of a better life. In fact they don't really work properly unless we do:


    The person with the tool is the person with the power: so we need to share our tools far and wide.

    If your tools are too precious to share, then they are too precious full stop.


    Thursday, 17 January 2013

    Long Term Conditions and Circles

    I spent the last 2 days thinking about how people with Long Term Conditions can be empowered to manage their own care. The evidence is striking - people who are confident enough to speak up, ask questions, voice opinions are half as likely to be victims of a medical error, and twice as likely to have a well coordinated health team around them.

    This struck me as an amazing statistic. Far more influential than any organisational changes by health services on the quality of support a person gets from the NHS is the approach that person (and their allies) takes to the people who provide their care.

    Conversely people who simply accept what they're told by health professionals, don't question, don't speak up, accept the 'victim and rescuer' paradigm, have much worse prognoses - the figure quoted was 7 years difference in life expectancy: The evidence base shows that it pays to be 'bolshie' (though the professionals who use 'evidence based practice' never mention this!).

    So the next question I'd ask is "how do we enable more people who might have a long term condition to be confident, knowledgeable and skilled enough to take back some power and control over the management of their own condition, and their own life?"

    I think that serious work to overcome disempowering depressing and demotivating isolation and loneliness is one key to this: intentional relationship building is a fundamental step that seems almost always to be overlooked by services, even though isolation and loneliness, lack or loss of relationships is a common factor in the lives of almost everyone experiencing long term health or social care.

    Coupling intentional relationship building with the powerful questions and tools that Person Centred Thinking has to offer provides an agenda that a circle could use to grow itself and to help a person think about their life.

    If this could also be coupled with personal health budgets, in addition to personal social care budgets, (or combined with them for extra simplicity and flexibility), then the person can begin to assemble the allies, the information and the resources they need to win back choice and control in their lives.

    This may well require the assistance of someone to help with the donkey work of assembling, administering and facilitating a circle and it's meetings. We call this person a 'circle facilitator', but they could equally be called a 'community connector', or a 'community champion'.

    I don't think we should be doctrinaire about whether a circle facilitator is paid or not.

    If we make too many rules around circles, we stifle how they might develop, and circles will develop in different ways with different people.

    Some people will feel that being able to employ a circle facilitator from their own personal budget, who they can then hold to account (and if necessary replace), is preferable to being beholden and grateful to someone who provides their time free, and also very preferable to a facilitator provided by and paid by the social/healthcare system, whose loyalties might be torn.

    The great pioneer of Disability Studies and the social model of disablity, Vic Finklestein did some really interesting work about the need for 'Professions Allied to the Community'. These are people who work directly for the disabled person, allowing that person to work out their own definition of what constitutes a 'normal' form of assistance, and who have the ability to freely challenge controlling and excluding approaches from traditional services based on 'cure' and 'care'. By doing this they become an engine for change in health and social care, and in wider society.

    I'm not sure whether or not a circles facilitator will meet Finklestein's description or not. I think they can certainly get close, but we all know that lifting something off the page and into real life leads to all kinds of surprises. It's something we need to experiment with, and see what emerges.

    Early work on circles created a small number of excellent circles and relied so much on personal goodwill. The people who got those circles got them largely out of luck, because (and I know this is a huge generalisation) they or their families had personal connections to people with the skill and the will to facilitate them. To build circles at scale, so that many many people are benefitting from what circles could offer requires us to think again about the 'rules' of circles, and be prepared not to rule anything out.

    The growing uptake of personal budgets is shifting the environment in which circles could develop. Establishing that a circles facilitator helps a person unlock extra social connections, extra fun, contribute their gifts and skills, and find a wider range of supports will provide evidence that paying for a circles facilitation is a good use of a bit of that budget, at least with those many people who would never get that facilitation any other way.

    Here's a link to a previous blog I wrote on circles of support and personalisation