Sunday, 1 December 2013

Michael Smull on One Page Profiles

Michael Smull speaking in Texas
Michael Smull sent out the following message to people on the Learning Community for Person Centred Practices general mailing list today, he's given permission for us to share it.

"In our efforts to support people in have lives of their own choosing within their communities we have developed an array of practices, skills, and tools. Notable among them are 1 page profiles.  They are both powerful and remarkably useful.  They have made significant differences in the lives of people and have been a critical part of making positive changes in practices.  One page profiles are not meant to be a complete picture of a person, rather they are a snapshot that introduces the reader to the person, outlines what matters most to that person and gives the top tips for support.  Part of their power is in their brevity and that, done well, they are visually attractive.  They are a powerful “tool” in changing how people are perceived and supported.  But they are not powerful simply because they exist but because of their impact.  People who use services, their families, and those who support them have given us story after story about how they have helped in their efforts.  For some people part of what was powerful was the learning that that takes place in development.  For many others it is how effective they are in introducing someone and advocating for them. 

A test for something being person centered is that it works for humans.  If it just works for disability it is clinical.  When we apply this test for 1 page profiles we see that can be helpful in a variety of human circumstances.  My 1 page profile as a trainer (on the learning community’s website) is very helpful for those asking me to do training.  With teams, I have facilitated a process for them to develop 1 page profiles on each other and team members find that they are then more effective in working together.
There are so many stories about the efficacy of 1 page profiles from so many places that I find it difficult that anyone paying attention can criticize them as ineffective. This is not to say that they cannot be poorly done or badly used.  They are a means not an end. They are not a “magic bullet”, they are not the only thing that needs to be done to change practices, but they are key part of what I teach and coach.   Criticism of those done badly or done just to be “trendy” is justified and useful.  Broad criticism flies in the face of the reality of their impact.  But that criticism has occurred. The criticism I have seen suggests that we are promoting  one page profiles as an end.  Yet if you read the stories associated with the profiles you see that it is how it was used not just that it exists.
Because 1 page profiles are being criticized we need more stories.  If you could take a few moments and share your learning it would be very helpful.  Clearly we want stories that illustrate the breadth and power of their use.  But, because we are learning community, we also want stories that illustrate your learning in what was required to make them useful.
Thank you.

Saturday, 30 November 2013

One Page Profiles: Just Garnish?

One page profiles are a simple person centred thinking tool that sum up what people like and admire about a person, what's important to that person, and the best ways to support that person on a single sheet of paper. Their simplicity and practicality means that they are becoming very popular, they are an easy first step in the person-centred journey. The growing uptake of these tools however  has inevitably meant that they have also invited criticism, criticism which gives us an opportunity to think more deeply about the best ways to use one page profiles, their benefits and their limits.

Last week Simon Duffy tweeted what looks like a quote from Peter Kinsella at a big everyday living conference "One Page Profiles are just garnish, they make no difference".

This is a 'black swan' statement. Find one black swan and you prove that the statement 'there is no such thing as a black swan' is pretty unfounded.

As a black swan statement, all that's required to prove that particular tweet wrong is one example of a One Page Profile that has made a difference for somebody. And of course there are many more than just one example, all kinds of examples and stories of one page profiles that made a difference are posted on the '100 One Page Profiles' blog. Stories are statistics with souls, and the list of stories on that blog is only growing longer and richer.

Sweeping statements that dismiss One Page Profiles and other pieces of person centred thinking as 'just garnish' are therefore pretty unhelpful and easily disproved, though to be fair to Simon and Peter, maybe the statement would have been phrased better if it was not constrained by the 140 character limit set by twitter.
 A more helpful statement would have been 'some one page profiles are just garnish and make no difference'. We could then investigate what makes the difference between one page profiles that achieve change in people's lives, and those that don't, so that we can work to create the conditions where more of the first kind are produced. This is the purpose of the Learning Community for Person Centred Practices, which develops person centred thinking tools, shares them and then gathers learning about the best ways to use them to ensure that people win more choice and control in their lives. You can also find TLCPCP on facebook and twitter.

There are however some more thoughtful criticisms of One Page Profiles out there that we need to consider seriously because they will help us work better at increasing choice and control in people's lives. Below I'm listing some of these criticisms, and giving what I hope are some  equally thoughtful and constructive responses, the beginning of a respectful learning conversation:

1.    "One Page Profiles are only for disabled people, so having one labels you as disabled"

We would argue that one page profiles have many many uses, with applications for many diverse people, including non-disabled people and situations that are nothing to do with health or social care.
On the 100 One Page Profiles website, there are examples of one page profiles used in mainstream schools, in a couple's birthing plan, to find a nursery, to help people know how to speak to a recently bereaved woman, as a way of applying for a job, as a method that an employer can support their staff. People are inventing new ways to use one page profiles in almost every aspect of their lives.
We also use one page profiles in our own work as trainers and planners, we share our own profiles with the people we serve, and their families before we ask them to share anything with us. We see one page profiles as being useful in many different people's lives and work, and not as something exclusively for disabled people.
Because they increase the amount of choice and control in people's lives however, we're do find one page profiles particularly useful in the lives of people who have less choice and control in their lives as a consequence of society's attitude to the presence of ill health or disability.

2.    We shouldn't use any predetermined tools or scripts. If we properly listen to people we can improvise and adapt our approaches in a way that suits that person.


There are a few, absolutely brilliant and charismatic facilitators out there who have the ability to facilitate person centred thinking and practice 'on the hoof'.

The rest of us however don't share this level of confidence in our abilities, many of us may be new, inexperienced and nervous, and therefore find tools that prompt and structure our discussions in a direction that inquires into a person's gifts and skills and that seeks out what really matters to them very useful.

 Having such simple tools means many more people can practice and experience person centred thinking. They democratise the practice rather than leaving it in the hands of a small and gifted elite, and mean that many more people get to benefit from more person-centred support in their lives.

 We also hope One Page Profiles will replace those much more complex and negative tools that services traditionally (and many still currently) use. Assessments and approaches that focus on what a person can't do, that inquire into people's incapacities rather than their capacities, that consider health and safety without also considering what really matters to a person and which implicitly regard the person as a problem to be solved are doing great damage to people, saddle them with negative reputations, and lead us to support them in paternalistic and overprotective ways.
Replacing such segregating deficit model tools with simple tools that focus on gifts and capacities and on connecting a person into the community is part of shifting the whole culture of health and social care toward a different way of regarding people.

 Of course we must endeavour when we use one page profiles, to do so in a way that respects the person's preferred methods of communication to be sensitive to what really matters to that person. We need to keep learning about what helps this work best.


3.    Sometimes One Page Profiles are just superficial lists of likes and dislikes.


Like any tool, there are useful ways of using them and ways that are less useful. I don't prove that my screwdriver is useless just because my shelves fall down, I prove that I need some help and advice to use my tools better.

 Using a one page profile well, to structure a meaningful conversation and to delvier change, requires a real intention to discover what's strong and valuable about the person, and a determination to find ways to support that person that make sense for the person, as well as a genuine will to act on whatever is learned.
To be able to write one page profiles with others, we therefore require that people have first written and used one page profiles themselves in their own lives, to gain an appreciation of their potential to make a difference when used well, and to ensure that we don't ask people questions that we have not been prepared to answer ourselves.


4.    Introducing One Page Profiles En Masse would lead to tickbox planning.

This is a real risk if one page profiles are implemented by people or systems that don’t care about one page profiles or the people they are supposed to be supporting, and don’t endeavour to train people well in how to use them. Such people implement changes to 'meet targets' without thinking more deeply about the purpose of such changes.
In such a scenario, we’d be likely to see plans that are just superficial lists of likes and dislikes. This would be far less harmful than continuing the implementation of tools that focus on deficits, but would not lead to the change we wish to see. Just like any other approach, one page profiles rely on genuine intent to listen well and to act on what is learned, and if change is to happen this intent must be reflected at every level.
Where people really are stuck in structures and systems so deeply imbued with this target-driven cynicism, then measures like personal budgets that enable people to seek support from outside such systems are going to be helpful. Good person centred thinking helps with good support planning and helps people use their personal budgets most effectively.
We'd also advocate other methods of cultural change within these structures, that shift the conversation away from targets toward the meaning and purpose of the work, and toward practical ways of bringing about system change.


5.    There are some things we don't wish to share about ourselves

Don’t share those things then!
It’s up to the person what they choose to share in their one page profile. It helps to think about what the purpose of the one page profile is, and therefore who needs to see it, as well as what they need to know and do to support you well. These questions help focus us on what needs to be included in a one page profile, and which people it would be shown to.


6.    One Page Profiles are not a panacea

One page profiles will not solve all the problems inherent in health and social care or in our disablist society. If you’re looking for something that does, keep working hard! We’re right with you! In the meantime people still need better lives that mean something to them, and better supports delivered in a way that makes sense to them. In an imperfect and confusing system and a society rife with unjust power and resource distribution, every tiny bit of choice and control we can win back in our lives is precious.


7.    One Page Profiles could become a substitute for doing more detailed person centred planning.


There’s definitely a risk that someone could write a one page profile and say “And now my work here is done”. However as we explain in this paper, the one page profile is just a first step in the person centred journey. There are many other tools that do equally useful jobs: communication charts, staff matching tools, tools that help us explain to staff their different roles and responsibilities, learning tools, community connecting tools, tools that help us move toward our dreams and avoid our nightmares. These tools are there to try out and experiment with. Find ways to use them that make sense to you. Share what you're learning while you do!
Please don’t stop thinking together just because you’ve completed a one page profile! There is so much more to discover, and it could be great fun discovering it!


Wednesday, 13 November 2013

Rhizomatic Leadership and Meadian Networking

I'm interested in the way movements and their leaders have effectively delivered transformational change. It's quite different from the straightforward almost mechanical model that we usually begin to use when considering how to lead and how to deliver change.

The way we tend to construct organisations, and the way change actually happens can be quite different. We tend to build organisations with a 'pyramid' shape. A small group at the top, a larger number at the bottom. The group at the top sets standards and rules that determine how the whole organisation works. Every organisation has it's flowchart showing the lines of power and responsibility stretching down from the top toward the bottom.

When we apply this model to reality however, we find it doesn't match how human beings actually think and organise. It doesn't reflect the complex knots of different circles and coalitions we participate in, particularly when working to deliver change in a highly complex society. It gives a very false picture of who the leaders of change actually are.

The rigidity and inflexibility of pyramid shaped organisations means they can become obstacles to change and to the kind of coalitions that work. I was privileged to hear John McKnight talking in Preston a couple of years ago about how voluntary community organisations tend to be more 'circular', while companies and statutory organisations tend to be 'pyramid shaped', and that the interaction of such circles and such pyramids can be very problematic.

In thinking about this blogpost, I googled 'Rhizomatic Leadership' and found this PInterest board by Renee Charney.  I haven't had a chance to speak to her or read her work, but in may ways the pictures of different kinds of rhizomes she has collected together in themselves show the 'knotty' way humans organise ourselves naturally.

In my experience of work for change in my own local area, people with affiliations to different local, national and international organisations, with very different cultures, belief systems, backgrounds, still often managed to network with each other in their every day work for change and to create productive results. These people were showing true leadership, prepared to take on each others ideas, be eclectic, experiment, and work together to see how things come out. Being doctrinaire, being 'pure'; insisting that your path is the only true path are all obstacles to such networking (Though the energy behind such single-minded commitment can be very useful to networks if ways of working together can be found)

Rhizomes are really really interesting. The biggest 'single' living organism in the world is a rhizomatic forest. To the eye it looks like thousands of separate trees, but under the ground, they have a single multiply intertwined and interconnected root system. If a piece of that rhizome root were detached and planted elsewhere, in the right conditions,  it would be capable of forming it's own rhizomatic forest. Rhizomatic root systems are strong because they go in all available directions, what nourishes one, nourishes all. Often they're hidden beneath the surface - people's unofficial, social and virtual networks being at least as significant as their 'official' position in a formal organisational structure. Chop down a tree, the rhizome that grew it is still there, nourishing more saplings!

Margaret Mead wrote a lot about forming networks of very diverse people around common goals, and a rhizomatic approach strikes me as being very similar - understanding that we gain when we're prepared to join with others, let the root systems that nourish us, also nourish them, and vice versa, what is a resource for one, is a resource for all.

David Towell blogs about this 'Meadian Networking' in his blog 'Networking for a purpose' with examples from the work done by very many different people and organisations with many differing interests and visions, to shift the culture of social and health care toward personalisation in the UK.

He uses a graphic developed by Margaret Wheatley and Deborah Frieze to argue that in any major cultural change process, there are 3 stages of emergence for radical new ideas and practices:
1.  A stage where small separate groups of individual pioneers develop groundbreaking countercultural ideas and new ways of doing things

2. A stage where these radical and experimental ideas are being applied in small areas, learning from this is happening and communities of practice are developing and sharing them, and then finally

3. A stage where these communities of practice themselves develop and network further into whole systems of influence that are much more widely accepted. It's easier when you see the picture he uses, so here it is:
From a network, to a network of networks, to a whole movement for social change"

So what implications does this have for people who wish to be part of leading person centred change today?

First of all I'd suggest that in terms of person centred practices, we're at a point in the transition between stage 2 and stage 3. The word 'person centred' is now widely used, the need for person centred practices and values is widely recognised, even if there are still many people unaware of the practical ways such change can be delivered. The practicalities need to occupy the space opened up by the aspirations before those aspirations become diluted buzzwords.

The experience of the UK suggests the deep value of being willing to network and connect with people with similar and values and aims, even where their way of doing things may seem very different - in complex multifaceted environments many different tactics may be necessary to achieve a single overall strategic aim: Any movement for diversity and inclusion, must by definition be diverse and inclusive. Sometimes this may lead to unfamiliar, uncomfortable and difficult compromises, but the most creative work happens when people with very different ways of doing things get together, and use the conflicts that happen between them as sources of productive energy rather than allowing them to become destructive rivalries.

To become part of  a 'system of influence' we need to work on what helps us influence: Our personal relationships, our work relationships, our online networks, all the multiple circles we inhabit where we can use influence. In areas close to us the chromatography of our influence will be clear, further away it may be fainter, and tinted with shades of the influence of others. This leads to the other role of influencers - finding ways to protect the integrity of the original values that motivated the change, without preventing the change. A subtle and difficult balance, but not an impossible one.

Tuesday, 3 September 2013

Keeping Fidelity To Person Centred Values

This is a question we need to keep thinking about: "How do we keep fidelity to person centred values?"

Because it's so clear that person centred thinking and practices are a neccessity, because of the heroic work of the pioneers of community living, of inclusion, co-production and self-direction, of rights and citizenship, the words 'person centred' appear on every health and social-care organisations' website. It's a phrase that gets bandied about at every management meeting, but we also know that these aspirations are not always backed by action.

It's particularly painful when some terrible institutional abuse is described in a news article. Then, almost inevitably. in their reply, the leaders of that organisation describe how 'person centred' their approach to care is. Every time this happens, it devalues the concept in the eyes of readers and encourages a cynicism that justifies inaction, some people already feel the phrase "person centred" is just part of a new social care jargon - though it's also very clear to many the difference between what truly person centred practice can be like, and some of the service centred practices they've experienced.

It becomes difficult for anyone who is new to Health and Social Care to discriminate between those organisations who think all they have to do to make their organisation personcentred is to stick the words into their mission statement, and maybe some colourful paper on their walls, and those organisations (and there are quite a few out there) who are seriously striving to bring about person centred change with the people they support in a variety of imaginative and innovative ways.

We need ways of ensuring people find the right trainers, with the right values, and ways that help trainers keep hold of those values, and maintain their hope.

We need ways of making sure that the organisations that do strive for person centred change are recognised for the efforts they're making.

We need stories that show what real person centred practice is like and the difference it makes.

We need ways that can help some organisations can break out of those self-deluding and complacent phrases "We're already person centred", "we do all that already" so that they can begin the journey that is the striving for person centred change.

The UK learning community for person centred practices (and the international community it forms part of) is one of the major ways that the above needs can be addressed - because it contains different people, with different backgrounds, experiences and perspectives and people who hold person centred practice dear to their hearts, making it a repository of the values that matter,

Our community must be a place where rich learning is shared, a place where we can celebrate and share the serious work that is being done for change. We must support each other to maintain good values and share the best tools and practices, tell those powerful stories of change and then find ways to share them with the world.

The way to respond to those who misuse the words 'person centred', who use it without reference to the deeply rooted values behind it and treat it as a mere buzzword or a passing fashion is to demonstrate practically in people's real lives the best of what being person centred actually means.

Sunday, 25 August 2013

The word "Moron": It's dark and bloody history.

I got involved in one of those pointless twitter debates yesterday. I was trying to point out to a fellow anti-fascist who uses twitter, that if he understood the history of the word 'moron', he wouldn't use it against the assorted fascist and thug organisations we both oppose.

It's difficult to call someone out on the language they use. They very rarely see any problem with their language. Their view is that the problem is obviously with the person who is pointing it out. They're being too sensitive, a bit prickly, pedantic and trying to police our language is exactly what fascists do, isn't it? And fascism is such dark, evil and dangerous force that any language or tactic used against it is justified, surely?

My point is that the same antifascists who use the word 'moron' so freely as an insult, would never use words relating to race or gender as insulting epithets, and that if they were to spend the time to investigate the history of this word, the concepts it supported and the consequences of these concepts for hundreds of thousands of people, they would understand why they should stop using this word in this way.

So where did the word 'moron' come from, and what does it mean?

Like many of these words, it was invented by a member of the medical profession: Henry H. Goddard, a psychologist and eugenicist. It was used freely in his seminal work 'The Kallikak Family'

A moron in Goddard's definition was precisely defined (If you can call anything related to IQ measurements precise or useful) as someone whose IQ fell between 51 and 70, higher up the IQ scale than an 'imbecile' or an 'idiot'. As can be seen from the illustration, this "scientific" theory also got mixed up with moralising and class and race prejudices. This brutal classification of human beings was used to justify compulsory sterilisation in the USA.

Between 1907 and 1963 64000 sterilisations were carried out in the United States, with eugenic sterilisation programs being enacted in 27 American states. As well as people with intellectual impairments, many of these sterilisations were carried out against poor people and ethnic minorities. The sterilisation program in California was particularly inspiring to the Nazi party in Germany, and funding for eugenics research flowed from the USA, from wealthy foundations like the Rockefeller institute to German eugenicists such as Joseph Mengele. Eugenics was also popular in Britain; as much an ideology of the left as of the right.

People are not aware in general, that the first victims of the Nazi holocaust were the disabled. Nor are they aware that it was not jackbooted Nazi stormtroopers that carried out the killings of disabled people in the Aktion T4 programme, but ordinary doctors, nurses and medical staff. Some of these people were card carrying Nazis, others were apolitical people, convinced by the prevailing medical opinion of the time (held all round the world) that eugenics was an ethical, moral, economic and even 'kind' way of dealing with disabled people. The concepts enshrined in the word 'moron' and the classification and segregation of human beings by IQ, popularised by eugenicists in the USA and Britain, helped convince these ordinary people that what they were doing, the sterilisation and 'euthanasia' was OK, even "in the person's best interests", because someone who was so disabled could obviously have no "quality of life".

Nor is eugenics something confined to the distant past. Sterilisations of people with intellectual disabilities continued in North Carolina up to 1974. The state just a couple of weeks ago set aside a $10m compensation fund to attempt to assuage it's guilt to the 7600 men women and children whose reproductive rights were stolen by this brutal policy.

In this facebook thread members of The Learning Community for Person Centred Practices recount some of their experiences of what happened in North Carolina: Bill Allen said "It still gives me shivers! At one time, Sonoma Developmental Center (not far from my home) was a "leader" in the sterilization of people with developmental disabilities. Years after there were restrictions placed on this practice, I found myself at a People First Conference in San Francisco. It must have been 1982. I didn't have a schedule, so I just decided on a session and walked in. As it turned out, it was a panel discussion on sterilization. What made this particular panel different from any others was that everyone on it (men and women) had been sterilized at Sonoma Developmental Center. Even more surreal was that there was a pro and con side of panel participants. I have never forgotten that day. If there is a video or audio record of it, I can't seem to locate it. Whether they agreed with it or not, it obviously impacted the lives of these individuals forever more. When the discussion was over, everyone on the panel chatted with each other and just moved on. It may have affected me more than any other event in my life working with people with developmental disabilities. California needs to follow North Carolina and soon!"
Val Carmine said "A former director of Caswell Center (NC) told me that he would get calls and letters from people who had once lived at the Center as children. They were wanting to start a family and were asking if anything had been done to them at the facility. Unfortunately 100 per cent of those people had indeed been sterilized."

The word "moron" is still heard in the mouths of bullies and those perpetrating vile hate crimes against people with learning disabilities. It's a word that among other insults and demeaning language forms the background noise of many peoples daily lives.

In conclusion, the word "moron" was deliberately invented by eugenicists to prop up their theory of eugenics. The word "moron" was used to justify categorisation, segregation, discrimination, sterilisation, euthanisation and  attempted eradication of a whole segment of humanity. It is a word that people who know the history of eugenics and the consequences of this theory to countless thousands of disabled people know is dripping in blood. To object to people who should know better using it is not being 'over sensitive'. It is simply to ask that people with intellectual impairments be treated with the same respect as other victims  and survivors of eugenics theories and the Nazi holocaust.

Wednesday, 14 August 2013

Thinking Bomb

I found this nice app called 'Tagxedo' and put the URL of this blog into it.
This is what it came up with:

Sunday, 11 August 2013

The Right To Think Differently Includes The Right To Think Differently

The learning community for person centred practices just tweeted "The right to think differently includes the right to think differently" on their twitterstream.

What they mean that as well as having a right to think differently about different things we also have a right to think in different ways. We can have very different opinions about all kinds of things, yet still get on together as a community, and we also need to learn to be just as open to people whose very thought processes seem different from our own.

I was listening to a programme on the Radio, about Japan and the way that the use of the abacus helps children understand number in an entirely different way from the fairly abstract concept of number we have in the west. By using the physical abacus, children start using the parts of their brains dedicated to sight and touch to understand number as well as the small part that westerners use.

In the West we've long had an idea that mind and body are separate - psychologists are discovering however that much of our thinking is done with our bodies long before we even become aware of it. 95% of the time the idea of a step-by-step logical and rational thinking process is just not the case.

The self-proclaimed champion of rationalism is Richard Dawkins. I used to follow him on twitter, and the key thing I noticed about his posts was not some cold Vulcan rationality, but an intensely passionate man, whose writing dripped with anger and other emotions. There's nothing wrong with thinking emotionally. It's how human beings think most of the time. It's our emotions that drive us forward, it's the way most of us are built! Instead of denying this and seeing it as a problem, we'd do better to understand it, and understand why it works for us most of the time (and why sometimes it doesn't!)

But when it comes to people who think in even slightly different, non-standard ways, we immediately see this as a problem, and even a threat. We label these people, we create fearful myths around these people, we try to 'cure' these people. We try to impose a false standard of rational and logical thought onto these people that we do not even approach ourselves. Rather than accepting these people as a part of the rich diversity of our species, we focus all our darkest fears on them, make them something 'other'. We have to learn to resist this innate desire to 'normalise' ourselves by 'othering' difference.

Zombie film 'World War Z' included the rather powerful idea that if there are 10 people in a meeting who all think exactly the same about something, then 1 person should be tasked to think something different about it, because otherwise no real thinking can be happening. This is suggested because real thinking only happens where there is difference, diversity, discussion and dialogue. If everyone is in agreement, then it's likely that most of us are not thinking. The conflicts that difference creates are the 'gadfly of thought' - they drive us on to thinking and contriving.

One example of this from medicine is the Jehovah's Witnesses refusal to accept blood transfusions. People got really angry about this. How stupid! How irrational! But the refusal of Jehovah's Witnesses to accept blood transfusions forced medical science to invest in the investigation of alternatives. This has resulted in techniques and products that don't rely on human blood, and these have saved many many lives, including those of many people who are not Jehovah's Witnesses. We may not understand their intransigence, but ultimately it is the Jehovah's Witnesses' gift to everyone who gets better and safer treatment as a result.

We need to understand that people who think different things, and people who think in different ways are very valuable. They have something to teach us, they open up new ways of seeing, being in and understanding the world. Business manuals are full of techniques aimed at encouraging businessmen to think in different ways, because this is at the heart of businesses survival. Strange then that the culture of business so strongly encourages conformity behind the bland uniformity of the business suit. Forcing a single way of thinking on society is as unhealthy as trying to impose a single racial characteristic or a single sexuality on society. Diversity is the greatest source of adaptability and strength for the whole human community.

Person Centred Thinking also challenges us to think differently. It asks us to stop just seeing things from our own perspective, from a 'professional' perspective, from the perspective of what suits the service, and instead to attempt to see things as the person sees them. It challenges us to drop habits of thinking about people's deficits, of thinking of ourselves as 'fixers' and to instead attempt to see people's gifts and assets, and to see ourselves as connectors, renewing people's place and relationships in the community, and thus strengthening all of us.

Monday, 5 August 2013

Vic Finkelstein's Story: "Revolution"

One person who made a major impression in my life was my friend Stuart, who I met at university in 1984.
Stuart was a committed socialist, so I spent lots of time with him organising the University Labour Club and the Miners' Support Group (Usually instead of studying).
Stuart had muscular dystrophy, used a wheelchair and drove his antiquated mini like a scalextric racing car, scaring the bejasus out of me.
It was Stuart who first introduced me to disability politics, by telling me Vic Finkelstein's story 'Revolution', which you can read in full here.
It's a remarkable story, in that it describes how well-meaning action can lead to exclusion and segregation, how in a society run by people with a particular impairment, it would be the people who did not share this impairment who would become 'disabled' by society itself: For example, in a society where everyone uses wheelchairs, why would they waste building materials on rooms with high ceilings? Then when someone comes along who belongs to the 2% that doesn't use a chair to get around, they find themselves having to stoop constantly, and wear a leather helmet to protect them from banging their head, they'd find it impossible to get work as workplaces would not be designed for their 'special needs', so would be forced into claiming benefits and seeking charity, even the clothes they bought in shops wouldn't fit properly, the ramifications are endless.
It's one of those stories that goes to the heart of issues of power and discrimination in society, when the environment and culture is structured in a way that ignores one section of society altogether.
Finkelstein's tale ends on a hopeful note, pointing toward the possibility of a society where people's different needs are met so they can each contribute their different gifts and get on together just fine.
What made me think about this story? The news today that Angela Bachiller has just been elected city councillor for the Spanish city of Valladolid. (The link I've shared is in Spanish, the English press don't yet seem to have picked up this story).
Angela will bring her experience of exclusion and discrimination as somebody with Down Syndrome to the City Council. She's already pointed out that many people with intellectual disabilities never even get the chance to vote.
How great that Valladolid will benefit from Angela's energy and commitment! There are plenty of people in our own communities who'd love a chance to share their energy, experience and commitment too, in their own way, if we had the imagination and will to create the kind of community where this can happen.

Saturday, 3 August 2013

What is The Learning Community for Person Centred Practices?

Readers of this blog will know that I travelled to Portland recently to participate in a gathering of the Learning Community for Person Centred Practices. I met a wonderful warm group of people who were welcoming and friendly, and who were facing the same challenges that we face in Britain.

After this, I had the great honour of participating in the community's board meeting that took place on the evening after the gathering and on the following day. It was great to sit among people whose work I've studied, and experience the personalities behind the words.

If I was to sum up in one sentence what the Learning Community was about, I'd say it was a place that people who are committed to person centred change, who want to see positive choice and control returned to the lives of people who have had it taken away by impersonal institutions and health and social care systems, can come together to share learning, gain mutual support and promote the very best practices.

The community is based in years of experience of implementing what became 'Essential Lifestyle Planning', and its deconstruction into 'Person Centred Thinking' and 'Person Centred Practices' whose directness, simplicity and practicality opened up person centred approaches to many more people. A key part of its work is gathering together what's being learned about what works and doesn't work in implementing such work, finding out what's most effective at creating positive change in people's lives and inclusion and contribution to their communities.

The learning community is International, being organised in a number of countries, including the USA, Canada, Australia, Britain and now India, and with many connections developing in other countries (I may have missed several out through sheer ignorance).

One of the key dangers person centred practices face is the misuse and perversion of it's language and techniques. All it takes for an organisation to claim it is 'person centred' is to stick this on their website. However organisations and individuals that take the challenge of increasing choice and control in people's lives seriously go far further, working hard with accredited trainers for deep cultural change in their organisations. Person Centredness is a journey on which many have embarked but where nobody has yet 'arrived', it's something we're striving for. TLCPCP therefore has an important role as the guardian of key values and practices that might otherwise be diluted or used as window dressing for what remain institutional and service-centred practices, particularly in a time of austerity where cheap shortcuts look so attractive to those that hold the purse-strings! (In the long, and not-so long run, such short cuts of course usually prove to be very expensive to all involved!)

The TLCPCP helps with this work by ensuring that trainers are accredited, and by renewing commitment and fidelity to the values that motivate person centred change. This is coupled with sharing very practical person centred thinking tools and skills that enable such change at scale. The crucial balance between fidelity to values and work at scale is at the heart of almost every discussion and debate held within the TLCPCP.

Given that TLCPCP is a non-profit organisation with no staff and very limited resources, it has achieved a great deal thanks to the commitment of its members and the warm support of partner organisations. It has aims to expand into new countries and further develop the evidence base for person centred practices, spreading them further and deeper so that choice and control can no longer be usurped from human beings by the systems intended to support them.

The TLCPCP has a lively facebook page and can be followed on twitter: @TLCPCP

Tuesday, 30 July 2013

Explaining 'Important For' with a camping hat

This is the first of a series of occasional articles that share some of the stories I personally use to train the concepts in Person Centred Thinking.

You don’t have to use these stories yourself, in fact I’d prefer you to find your own stories. I’m sharing these stories because they work for me. If you can work out WHY they work,then you’ll be able to come up with stories that work better for you.
The ideas of 'important to' and 'important for' and the skill of seeking a way to find a balance between them that makes sense in the person's life is right at the heart of person centred thinking, so finding a way to explain them that sticks in people's minds is important for a trainer.

When I’m explaining the concept of “important for” it’s easy to say “Important for means all those things that keep us and others, healthy, safe and acceptable within the community.” And that it’s usually other people who are good at spotting what’s important for us. (Which is why self advocates from ‘People Planning Together’ use the gesture of a wagging finger to sum up what ‘important for means to them).
I think telling a story around important for helps  people understand it better than just at this abstract level. I also think telling stories from your own experience works best. So I tell the story of my camping hat:

When I go camping, I love to wear my camping hat. It makes me look like a proper veteran camper. It keeps my head warm and dry when it rains. It keeps me in the shade when it’s sunny. My camping hat is therefore brilliant at keeping me healthy and safe, and is just excellent to wear on a campsite. I really love it!

When I get home, I want to carry on wearing my camping hat. I’ve got used to it. I like how it feels to wear it. But my wife Lorraine tells me “there’s no way you’re going out that front door wearing THAT!” In regular life, it’s important for me NOT to wear a camping hat. It makes me look outlandish and a bit unkempt. My neighbours would talk about me behind my back. My boss at work would not be happy about the impression I’m making to others. The person I care most about would feel unhappy (and Lorraine is very important TO me!)

I thought this was a great story to explain ‘important for’, I told it recently to Julie Malette, and with the expertise she’s built up over years of excellent training she immediately pointed out a way I could turn a good training story into a great training story: BRING IN THE  HAT! Then people would understand just why Lorraine dislikes that hat so much. They would remember how daft I looked wearing that hat in the context of a training. The story would stick in their minds.
So I’m going to have to find a new hat. My old camping hat mysteriously disappeared one day.

Lorraine denies all knowledge…

Sunday, 28 July 2013

Ontario Gathering 2013

Here are some details of the Ontario gathering of the Learning Community for Person Centred Practices:
For the full sized flyer, click here: Ontario Gathering TLCPCP

Saturday, 27 July 2013

Portland Gathering 2013 Thursday: Connecting with the Community

Ideas about inclusion and community living
World Café Graphic

 Thursday's session of the Portland Gathering of The Learning community focussed on connecting with and building communities.

Michael Steinbruck challenging delegates to think
deeply about how they enable people to connect
We know this is a key problem for many people, with the rise of loneliness and social isolation affecting more and more people.

We discussed how Beth Mount is suggesting that the focus of our work needs to shift more toward community connecting, and Michael Steinbruck asked us to ponder the tools and strategies we've used that work to connect people.

Many strategies were discussed. The reality that the most simple approaches were the best: really being intentional about introducing and connecting people, in person, then allowing people to connect rather than getting in the way.

Tools like "from presence to contribution" and "what happens here" that help us think about how to support people to do more than just 'be present' in community settings, but actually participate, connect and contribute were discussed, and in my feedback I suggested looking into the '5 Ways to Wellbeing' (Staying Active, Connecting, Keep Learning, Taking Notice and Giving) as something that applies universally to how we can be in the community.

What was widely recognised as the most deeply instructive session of the morning was led by 'CJ' Webb of OTAC (Oregon Technical Assistance Corporation), the organisation that organised and hosted the Portland Gathering so brilliantly.

She gave us a very simple exercise: each table was given one or two words, with the instruction to go out into the community and find out about those words, without using the internet at all. The catch being we only had 30 minutes to do it in!

Our group had the words "Council Crest". Being a Brit, I assumed that this meant some kind of coat of arms that belonged to the local city council, so I began to study the parking meters and drain covers to try and find some insight, with no luck. My colleagues however found that a much more successful strategy was simply to stop passing people in the street and ask them what it meant to them.

We soon discovered it was a beautiful part of Portland, a mainly residential area overlooking the city with the most amazing view, and a very popular park. We found out detailed instructions of how to get there, and that it was also one of the best places in Portland to go to 'make out'.

Another groups found out the meanings of 'Stumptown', (Portland was originally surrounded by the stumps of trees, cut down to provide the wood to build it)

The group that was sent out to find out the meaning of 'Peach Melba' not only found out the story of it's invention, but sourced the ingredients in the community and made some from scratch to share in the session, all within the 30 minute deadline.

Another group had been busy seeking the meaning of the words 'Red Robin'. A homeless person became so intrigued by what they were doing that he went out of his way to help them. One of them told him "We walked past 4 homeless people before we talked to you". She felt this was deeply instructive about who we include and exclude from our concepts of 'community' when she shared this story with the rest of the Gathering.

The group that went out looking for the meaning of the word 'weird' was told "In Portland we think being normal is weird".

Kristi Patton's group found Mill Ends Park, the world's smallest park, which consists of one single small tree and a couple of rocks.

In the feedback about what they had learned about how we might contribute to community people said things like:

  • "We can be knowledgeable about our own communities so we can be brokers of information to our communities"
  • "Take the journey and risk learning something new, slow down and be more observant"
  • "Being present, helping others feel welcome and comfortable"
  • "Take time to plan, walk and look at what you've never seen before by walking"
  • "The community is a cornucopia of free opportunities" "Find out what is important to the community"
  • Laura Buckner tweeted "Don't forget people have virtual communities...FB, linkedIn, twitter etc....more connections!"

Overall, I found that over the 3 days I had had wonderful welcoming friendship from all the people at the gathering. At first I'd been noticing all the differences between Britain and the USA, but by the end I was realising there were far more similarities, that we share very much the same challenges and opportunities.

I realised that in our learning community, we've an international family of people who are speaking the same language of inclusion, connection and focus on what's important to the person.

I'll go home having learned a tremendous amount, with a load of questions to think about and a stomachful of inspiration. I can't wait to get back next year!

Thursday, 25 July 2013

Portland Gathering 2013: Wednesday: Keeping the Fidelity of Person Centred Practices

Michael Smull talking on the history of
 Person Centred Thinking and Practices
The theme of Wednesday's session of the Portland Gathering was to discuss how to keep true to the core values of person centred practices.

Shae Dotson and Sherry Anderson began the day, exploring the role of planning in enabling people to live better lives. Shae quoted Antoine de St Exupery: "A goal without a plan is just a wish"

Michael Smull gave a comprehensive account of the history of the Learning Community for Person Centred Practices.

5 common dreams: all from us!
He explored the problem of trying to discover what a person's dreams might be when that person had spent an institutionalised life with no opportunity to develop dreams beyond "to get the hell out of here". Back in the 1980s Michael and his colleagues had been talking to people who had remained 'stuck' in institutions because the information that accompanied them focussed on the most negative and embarrassing aspects of their history, often going back 20 or 30 years.
"These were people who if you read what the assessments said about them you would not want anywhere near you, but if you met them and spent time with them, you knew they were cool"

"The people we talked to came up with 5 common dreams, and we realised that these dreams didn't belong to these people, they were really our dreams for them. They were watching our faces very closely, and trying to help us by telling us what they thought we wanted to hear. We realised that dreams come from experience - from opportunities to get a little taste of something and say "I'd like more of that", so we started to realise that before you get a dream, you need to get a life, so we were grappling with the question "How are we going to figure out how people want to live if they don't have dreams?"

The questions and approaches they developed to answer this question began to form the basis of Essential Lifestyle Planning around 88-89. Michael shared that one parent had told him "PATH got my daughter her apartment. ELP got my daughter her life in that apartment", showing how the two approaches complemented each other.

Michael recounted how implementing ELP however was not plain sailing, and had several 'false starts', including many states trying to implement ELP without any training for those who would put plans into practice, imagining that plans could be 'self-implementing'.

He also discussed the difficulty of finding ways to teach ELP beyond simply demonstrating it and expecting people to copy. Here the work of Bill Allen, who introduced a whole range of teaching exercises and new tools that we now refer to as the 'discovery tools' was crucial.

By 2001 however they began to realise that there was still a major problem with implementation: In reality only a pretty small percentage of people needed to know how to write an ELP, but 100% of people needed to know how to implement a plan - how to make sure that what we learn is important to a person is present in their lives.

This led to the development of what we now call 'Person Centred Thinking', ELP was 'deconstructed', being broken into smaller and simpler skills that people could build into their everyday work, and processes like Person Centred Reviews.

Shea Dotson scribing
Alongside this it became obvious that it was absolutely necessary to involve families in planning, Mary Lou Bourne holding the first families planning together sessions with Shelley Dumas, and Sue Cullen developing approaches to enable people that use services to write their own plans.

The practices have spread out to other areas, including schools, older people, mental health services, and many other groups of people and internationally to the UK with Helen Sanderson, Canada, Australia, Europe and now India.

World Café Question
As these processes, tools, skills and learning have been developed, all intellectual property rights have been given to the Learning Community for Person Centred Practices, a not for profit organisation, and lots of people are generously feeding their learning and resources into this pool of practice knowledge, such as Helen Sanderson who is collecting examples of great one page profiles and Nancy Mills who has built a website. "Our vision for the TLCPCP is to build a worldwide hub to share learning" said Michael "This would be easier if we had staff, but we don't".

Michael said that we need to be clear that Person Centred Thinking is "Not THE answer, but part of the answer". "We're still wrestling with how to move from "Power over" to "Power with" and how we form the partnerships necessary to achieve this".

The day went on to use World Café to think about the role of planning in enabling choice and control in people's lives, in the knowledge that the future is likely to be as challenging and full of change and new learning as the past.

We moved from table to table discussing these questions with new sets of people. There was a lot of discussion around the tendency for organisations and states to find ways to dilute or pervert the essence of planning. In the feedback the loudest round of applause went to the delegate who said "The role of planning is whatever it needs to be as defined by the person receiving supports"

The next section of the day was spent in a variety of breakout sessions. I went to the 'People Planning Together' session and was blown away by the quality of a curriculum that is enabling learning disabled people and other self advocates to become trainers in person centred thinking in their own right. Some of the discussion here was around what was required of a trainer, and ways of overcoming issues of communication, such as people who don't use words to speak.

One new thing I learned was the signs for 'important to' (hands clasped close to the heart) and 'important for' ( a wagging finger).  Eddie asked us to make collages representing what was important to us, leading to a rich discussion over what worked and doesn't work in training from the experience of trainers, and the experience of learners.

From my point of view, the importance of the day's theme was given acute counterpoint when I read about the treatment of the son of this BBC blogger who was unlawfully detained in a care unit:

"One of the unit's ideas was that he should have a person-centred plan. He had to create a wish list, and came up with six things:

  • Live at home with Dad
  • Go on holiday to Somerset
  • Have Christmas presents at home
  • See Toy Story 3 at the cinema
  • Have breakfast in the bacon shop
  • Go swimming at Hampton open-air pool

All six wishes were refused because they were not considered to be in his best interests. To me, that's not a person-centred plan, that's a system-centred plan."

Every example of this kind of perversion of person centred practice generates cynicism and pessimism. One key role of the Learning Community for Person Centred Practices is to ensure that a community of practice exists that is strong enough to ensure that this kind of lip-service to PCP is never considered to be a true representation of the practice, and that the trainers and mentors accredited by the TLCPCP never allow their work to be perverted in this way.

Wednesday, 24 July 2013

Portland Gathering 2013. Tuesday: Decision Making, Risk and Conflict

I'm currently attending the Portland Gathering in Oregon. The gathering began on Monday, but I spent this day travelling, arriving pretty late Monday evening so I can tell you what happened on Tuesday.

The theme of Tuesday was focussed around supporting people to make decisions. Leigh Ann Kingsbury began the day, talking with Mary Beth Lepkowsky about the issues involved in helping people to make their own decisions, and about involving people in big decisions about their services, teams and organisations.

Leigh Ann pointed out that while we imagine that our decision making is logical, rational and sequential, in reality we often make impulsive and emotional decisions. Mary Beth continued the theme, saying that "Decision making is not always a clean process, but it can be a thoughtful process", the key question, where people lack capacity to make a particular decision and therefore need someone to make it on their behalf being "Does this decision align with what we know about that person's core values for their life?".

Bob Sattler asked the question "We often tell people 'It's your choice', but is it really?" He shared a tool that looks at the things that are important to us, ranks them using a score of exactly how important they are, and then also rank how present they are in our lives.

Julie Malette presented a brilliant summary of the person centred approach to risk, pointing out that everyone has the right to make risky and bad decisions, and using practical examples to help people explore some of the tools in the person centred risk process.

Mary Beth and Leigh Ann explored issues and pitfalls of co-productive decision making, sharing tools that help identify who should be involved in particular decisions, and what role they could play in those decisions, concluding "We've learned that the more inclusive we are in any process, the better the outcome".

In the afternoon I presented on person centred approaches to conflict, asking questions about what it is that means the difference between a positive conflict that leads to progress and change, and negative conflict that leads to harm to one or both parties in that conflict.

People particularly liked Helen Smith's volcano' tool that asks people to think about issues and situations that put them into particular 'zones'; the comfort zone, the stretch zone and the danger zone, and if there are particular methods or techniques that help them get back from their danger zone into one of the safer zones.

Wednesday's session starts in an hour or so, so I'll do my best to let you know the key items we discussed tomorrow.

Watch this space!

(Photo of me thanks to Douglas Tennant)

Friday, 31 May 2013

The problem of sexuality policies for disabled people

There is generally low levels of training among staff in services for disabled people around sexuality, and staff’s own attitudes about sexuality can impact massively on the people they support.
Even where sexuality policies exist, these can reveal a lot about the  power assumptions that exist within disability services. An example of this is the sexuality policy written for a residential service for people with spinal cord injuries published very recently by the Spinal Cord Injury of Association of British Columbia.
I'm posting an image from that policy; a decision making tree for staff, giving them guidance on when they should assist people who they support with making love (and when they should not).

There's no doubt in my mind that this policy will have been welcomed both by staff and residents at the service it was written for. The policy prohibits staff from making value judgements about same-sex or extra-marital sex and establishes the circumstances where they may assist people to have sex who otherwise would not be able to. However, while the policy shares materials designed to assist staff in these decisions, no such support or guidance around sexual decision making is contained in the policy for the residents themselves.
Where the person lacks the capacity to consent to sex, staff are required to decide whether or not engaging in a sexual act is in the person’s best interests. This seems an incredibly difficult question to answer for anybody about any particular sexual act. Do non-disabled people ask themselves "will this sexual act be in my own best interests?" before every sexual encounter in their lives?

The document is written by medical, ethical and legal experts. There is no evidence that anyone with spinal injuries was involved or consulted when writing the guidance.
The final outcomes of pathways through the decision tree require that staff must ‘prohibit’ or ‘allow’ particular sexual acts; emphatic words revealing the huge, some would say inordinate, power invested in staff, including the power in one pathway to over-rule the decisions of a person with the capacity to make decisions, where the staff person decides that the risk of harm is unreasonable, even when the person themselves is prepared to accept that risk.

Most people will welcome that organisations like the BC Spinal Cord Injury Association are trying to write guidance around issues of sexuality in the lives of disabled people. This at least challenges the prevailing avoidance of such issues, but what the policy also reveals is the immense power over people's lives that continues to be invested in support staff.

I feel it's fair to ask whether it is acceptable to provide guidance that instructs staff to 'prohibit' the expression of sexuality, and whether an issue as complex and personal as sexuality can be reduced to a simple flowchart.
How would this sexuality policy have been different if it had been co-produced making sure that the residents of this service themselves had been fully involved in writing it using a process like Working Together for Change?