Portland Gathering 2014

This blog has recently had it's 10,000th visitor. That's not bad for a blog that I woefully neglect and update far too infrequently. I'm using this success to motivate me to write here more regularly.

I spent last week in Portland, for The Learning Community for Person Centered Practice's gathering in Portland Oregon. There's a good video that interviews some of the participants here:



I gave three presentations there. One was on the Justice for LB campaign, one was on writing really good One Page Profiles, and one was on the work of building community circles in the UK.

I chose these topics, because I felt they were the most important things happening in the world of person centred practices in the UK that the delegates at this conference in the US should hear about, for different reasons.

I felt it was vital for people to hear about Justice for LB, because it's a story that illustrates just how vital it is for services to listen properly to people and their families, and the potentially tragic consequences of failing to do this.

The family had tried to hold a person centred review for Connor Sparrowhawk (LB) at the Assessment and Treatment Unit. They wanted to share what was important to Connor (interesting activities, London Buses, Eddie Stobart lorries, artwork and much more) and what was important for Connor (the fact that his epilepsy was getting worse and the support he would need with this). The staff at the ATU had no time for this thinking however, because it was "not the Care Programme Approach" and did not take it seriously. Connor died a needless and avoidable death by drowning in the bath at the ATU, having presumably suffered an epileptic seizure while unsupervised in the bath. You can read more about the circumstances of his death in the Verita report published about it.

The people who came to this session were visibly moved by Connor's story. They told me that on occasions where this kind of thing happened in the US, the company involved would generally be put out of business, either by quality inspectors, or by the cost of the damages they would have to pay out.

The key issue was that the family had the answers all the time. They knew about the support Connor needed, and they knew that person centred approaches like the person centred review were the way to think together about, plan and deliver the support he needed. All that was needed was for the service to listen to Connor and his family.

"Good support starts and ends with listening. Listen to the person. Listen to the people who know the person best. Listen again. Ask questions, keep listening. When you finally think you’ve heard enough, you’re wrong. Listen more".

I've written previously in this blog about the Winterbourne View Concordat, Justice for LB, and how person centred approaches could be part of helping people get out of Assessment and Treatment Units and into the community.

I talked about One Page Profiles because they are proving to be such a brilliant way of introducing person centred change into individual people's lives, and at scale across services. There was really warm applause for the 100 One Page Profiles blog, which was seen as a real asset for person centred practitioners, both as a source of stories, a repository of great examples of the best one page profiles, and as an illustration of the breadth of applications for this person centred thinking tool. Michael Smull told me personally that he considered Helen Sanderson's work on One Page Profiles to be just as brilliant as anything he himself had ever come up with, "and that's speaking as someone with an ego the size of mine".

I spoke about Community Circles because this is an idea with immense potential for the future. We've looked at ways we can apply circles of support at scale, by making them simpler to facilitate and by offering really good support to facilitators. We've also looked at really good applications for circles: in care homes for the elderly, at the end of life with hospices, and their use by faith communities with people who have become isolated because of disability, ill health or circumstances.

The board of the TLCPCP later agreed that the principles that make circles work, shared in my presentation could potentially also be used as principles with which the Learning Community itself could reframe itself as a growing international community of practice; we could become a global circle sharing our learning together. This is really exciting news, and something I'll be thinking and talking about a lot more in the months to come!

A really big highlight of the Gathering for me was meeting Angela Amado, a leading figure in the field of creating inclusive connected communities, for example I really admire this manual on connecting people with disabilities with their local communities. It was great to tell her about some of what Connect4Life has been doing in central Lancashire.

Overall the gathering was a great opportunity to meet a room packed full of real leaders, ideas people and creative change makers: people full of energy and experience, with a determination to change the system, who have certainly boosted me and made me feel optimistic about the prospects for helping many more people gain choice and control in their lives.

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!







A Funeral With A Difference

I was really inspired by this story in the Huffington Post about the funeral of James McConnell.

When this man died, alone in a nursing home, it was looking like he'd have nobody at his funeral, except maybe one or two of the home's care staff. I've been at funerals like that myself.

The local vicar, Reverend Bob Mason didn't want to preside over such a sad occasion, and began to campaign over facebook for people to attend the funeral. Thanks to his work well over 200 attended, including many other veterans of the Royal Marines, who gave him a far more fitting send-off.

Here's the radical question: What if someone had done the same thing a year earlier, when McConnell was alone and unvisited in his nursing home? Maybe 200 people wouldn't have responded. Maybe not even 20. What if 2 people had responded, and visited him maybe once a month each? That would have given him a fortnightly visit to look forward to in the last year of his life.

What if we did this with many more of the people living isolated lives? What if we started thinking that connecting isolated people up with other people was as important as giving them their medication or a wash?

Is it a daft question? What do you think?

Local Food Justice

My last post on the UK Horsemeat scandal and the need for local communities to regain control over those fundamental aspects of our lives, like our food, how we support each other, how we live prompted a reply from John O'Brien, which from my perspective is about as incredible as Shakespeare leaving a comment on a blogpost by Jeffrey Archer, with or without those certain logistical issues.

I noticed that the link he posted hasn't been activated by blogger, so I'm reposting it here so that you can click straight through onto the video he recommends. Well worth a watch!

Local food justice initiatives have been fertile ground for contributing roles for people with learning difficulties and autism. Learn about one effort at http://www.gcdd.org/news-a-media/videos/viewvideo/24/mixed-greens-a-real-communities-initiaitve-project-savannahs-forsyth-farmers-market.html

 

gcdd.org

Food Fight

Something's been building up inside me as the scandal around adulterated Tesco burgers, contaminated Findus Lasagne and the fact that the multinational food industry has been feeding us horsemeat in the guise of beef, at least since August on a fairly massive scale.
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Behind the scenes, but across the country, in community after community, things have been happening that I'm only just realising were the beginnings of a groping toward an unconscious defence against just such eventuality.

Because for the last year or so, in response to growing need and hardship, communities have been setting up food banks, to make sure their hardest pressed members got fed. Volunteers have been collecting from neighbours, and recycling food that might otherwise have been dumped.

This has been coupled with ideas like 'slow food' and 'grow it local', where land owned by the council the NHS, or just standing idle has been reclaimed by the community for 'Community Food Growing Initiatives'.

Would you like to know how many times you've been eating this?

What these developments suggest to me that we're intrinsically sensing, is that food has just got out of our control. Whether it's pink chicken mush, burgers and buns that simply never look mouldy, factory farmed, antibiotic stuffed stressed animals, we really don't like to even think about it, but for many it's all that's available to us.

We're thinking that if communities win back control over the food we eat, we can eat something that we actually know where it came from, how fresh it is, what chemicals it contains.

And communities need to win back control over other parts of the 21st Century that are going wrong too. All those people who may exist in the same geographical space, but are trapped without any contact with the community around them, little hermetically sealed units where they may or may not get the occasional visit from a health or social care agency, but where for years the person's actual neighbours have not felt confident to tread. We need to break down those invisible walls that are dividing our communities.


Clydesdale Community Food Market

In all our communities, we need to win back control over our food, our health, our care for ourselves and each other.

Cormac Russell recently spoke to the people at 'Occupy Wall St'. He said to them: "When you've finished occupying here, I hope you go back and occupy your own communities. That's where the hearts are being ripped out of you, that's where the process begins that ends in Wall St. The movement for change can only start on your own doorsteps"

While our superstores are feeding us horsemeat, our communities are building alternatives. Today we're struggling to win back control over the very stuff of life - our food, our relationships, our lives. We're choosing to do it in community.


I got the images for this post from: http://www.communityfoodandhealth.org.uk/community-based-activity/case-studies/clydesdale-community-food-market/clydesdale-community-food-market-2/

and http://sherific.blogspot.co.uk/2011/02/fast-food.html

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 http://inclusiveneighbourhoods.co.uk/)

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