Connecting with gifts: Molly’s reflections from Turkey

Being in Turkey has woken up my inspirational spirit again; something I thought had gone missing. It wasn’t lost; it just needed a kick in the right area!

Teaching community connecting to others is always a challenge. There often is a fear by supporters and paid people that it is going to put them out of a job, a fear by relatives that people will get hurt emotionally and physically (by being let down by others or taken advantaged of), that the Community is not welcoming or ready to engage with people with disabilities. Yes these are the reasons why I continue to teach about connecting people because being a member of communities myself I see how it works.

In Turkey where we are teaching about person centred working and community connecting, I have had the privilege to observe connections happening between people with disabilities and community members in short periods of time with little to no effort needed by paid workers. It took the right place, time and opportunities to be with other people, and sharing gifts. That is all!

Ozge is a student living in Istanbul, a beautiful young woman who has experienced of institutional life. Now she is on the course to be a trainer, staying at the hotel with the other group of trainers. She has found a friend there in Fatma, the waitress in the dining area every morning and evening when our training group had their meals. Ozge connects with her eyes: she looks intently at you and then, if connecting with you, blinks and smiles this infectious smile that melts your heart, so all you want to do is to keep looking at her to see if she really means you. She does not do this to everyone, it is intentional and it means she wants to know what you are thinking. Every day Fatma spent time talking with Ozge during breakfast, and dinner. She even stayed later than her shift to keep talking with Ozge. Fatma is also a student, studying in Ankara when she is not a waitress. Both are on Facebook and whatsapp so they can exchange information, but better than that, Fatma is visiting Istanbul and Ozge has invited her to her home.

What did it take to connect Ozge with Fatma? There were the opportunities to meet at consistent times. Being with other people who value you so others know how to connect – her support worker Yelda knew when to support and when to back off and let Ozge do her own thing. Shared interests were introduced by just having informal chats. The gifts of a smile, eye contact, or the excitement over seeing someone each day which, as Fatma told me, brightens up their day. And, it was important for Ozge to be respected by someone like Fatma who is of a similar age.

Hulye is a very quiet soul. You recognise when you meet her that something bad has happened in her life. She recently moved from a very large institution where she spent 22 years of her 30 years into her own home with two friends. You can see from time to time a glimmer of hope that says “this time life might get better if I am careful”. Hulye spent a week with us training away from her home city. Every day she would sign in at the reception desk overseen by Emre from the organisation hosting the training. He also took photographs of the training and so was with us in the room throughout. We had done lots of drawing that Emre had dutifully captured and on the last day Hulye went to the desk and with a big smile on her face handed him a picture she had drawn herself. Emre asked if it was for him and she nodded. He asked about the picture with the house, the trees, the flowers, and the sun. She said it was where she lived now. Emre thanked her graciously, using her name, and later told the trainer how Hulye’s gesture had moved him to tears. He said he had never been given such a better gift in all the time he had serviced such events. He got Hulye’s address and said he would like to keep in contact, but whether he will or not is less important than the fact that this community member will not walk towards not away from people with disabilities in the future. That is his gift from Hulye.

These are just some of the people who have connected with me but also with others in a country where the social model of disability is a very new concept. Now they are getting it ‘live’ from people like Ozge and Hulye.

The long shadow of Winterbourne

Winterbourne View still casts a long shadow over the support that we, as a society, offer to people with behaviours that challenge. We’ve seen the television programmes, read the inquiry reports and heard the official responses, but we cannot pretend that the sort of problems exposed at Winterbourne View will go away until we change the culture that accepts institutional care as the norm for this group of highly vulnerable people. Despite the consensus that they should be supported within their own communities, enjoying their rights as citizens, we hear very little evidence of this being played out in practice.

One of the reasons, I suspect, is that there are too few people with the right skills and experience in positions to influence those who make the key decisions about supporting people who challenge. What I mean is that we need to start prioritising skills and experience in connecting rather than regarding them as an adjunct to all the behavioural supports that people with certain labels invariably attract. In saying this I don’t mean to belittle the work of specialists in this field – they clearly have a vital role to play – but it is more a plea to address the fundamental of human existence including the need for relationships.   

So here are two things you can do as the people with those skills and experiences. The first is to take part in a free event being run by The Think Local Act Personal (TLAP) and the Winterbourne View Joint Improvement Programme in London on Thursday 27th February. It is an opportunity for you as frontline connectors to sit alongside commissioners, providers, family carers and others and provide a unique perspective on what should happen from now on.

Click here for the event flyer.

You can find more details about the project on the National Development Team for Inclusion website and the TLAP website here.

The second way is by getting involved in the Engagement Reference Group that is being set up by the Winterbourne View Joint Improvement Programme.  The aim of the reference group is to help people from across England get involved and again we must ensure that the right mix of views and experience are being drawn upon.

Reference group members can choose not to get involved if they are busy or it is something they do not want to work on. If you are interested in joining the engagement reference group, or would like more information, please visit the website

If you would like to find out more about the engagement plan and work, you can also get in touch with Angela Ellis, the Engagement Adviser angela.ellis@local.gov.uk.

Checking the quality of community connecting

The Learning Disabilities Good Practice Project was set up in the wake of Winterbourne View to highlight services that improve the health and lives of people with learning disabilities. The report, published at the end of November, includes examples of good community-based supports and is well worth reading, not least because the work behind it was carried out by people with learning disabilities and family carers.

You can download a copy of the report here.

My eye was drawn to the example of the 360˚ Quality Checking initiative in Gloucestershire, in particular how quality checking has identified the importance of social networks in the lives of people with learning disabilities in the county and the impact of social isolation. In response, people’s circles of support are now invited to be involved in quality surveys.

This set me wondering how we should go about checking the quality of community connecting. This is not just about the questions we should ask, but also how we go about gathering information and, most importantly, what we do with that information once we have it. I’ll be posting a wider review of quality checking and community connecting in the New Year and you can help by using the form below to share what happens in your area or any examples that you are aware of.

Thanks and I hope you enjoy the festive season.

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Recommended new resource… and it’s free

Friends: Connecting People with Disabilities and Community Members (2013)

By A. Amado

This new manual provides concrete, “how-to” strategies for supporting relationships between people with disabilities and other community members. It describes why such friendships are important to people with disabilities and why it is important to promote community belonging and membership. The manual includes specific activities to guide users in creating a plan for connecting people. It is designed for agency staff, but can be used by parents, support coordinators, teachers, people with disabilities, and others to support community relationships. Additional Activity Worksheets are available in a separate document. Published by the Institute’s Research and Training Center on Community Living.

Cost: Free. Available on the Web at http://rtc.umn.edu/docs/Friends_Connecting_people_with_disabilities_and_community_members.pdf.

Additional activity worksheets available at http://rtc.umn.edu/docs/Friends_Activity_worksheets.pdf

 

Meeting the neighbours

Much social policy of the past 25 years promotes ideas of independence, choice and control. These seem to be straightforwardly good things, but how often do you stop to think about what they mean for the way we support people?

The first thing to say is that there is a very obvious political message in the prominence given to these ideas. They articulate a more general obsession with individualism and market forces, so that independence, choice and control might be translated as ‘you are on your own’, ‘life is a bit like a supermarket’ and ‘here’s the money, you decide what to buy’. This is a very crude characterisation to be sure, but the metaphor of the supermarket does seem to resonate with so much of what is happening in health and social care at present.

Some bemoan the use of the term independence as cover for not providing adequate support for someone to live independently, ie in their own home. This was the point made by Charlotte Leslie, a Tory candidate in in her blog for the Daily Mail in the lead up to the 2010 general election – which seems ironic given what has happened since. But to be fair to her, politicians form across the political spectrum could have been making the same point about people being let down by an underfunded system.

The real question is to what extent is independence about being on your own? Loneliness is something that very few people crave, but is one of the outcomes often associated with ‘community care’. In many policies independence means little more that living in a home of your own while much of the academic literature conflates choice, control and independence under the banner of autonomy. In broad terms this describes those aspects of my life about which I can exert some influence.

Yet we are social animals, not simply because we cannot function at even the simplest level without the cooperation of others, but because it helps us to feel safe, happy and stimulated. Take a few moments to read this article in which journalists from one national newspaper report what happened when they were set the task of getting to know their neighbours. The strategies involved, the emotions it provokes and the results achieved by this simple self-connecting will be familiar to many of you from your work.

What it illustrates is that however independent or autonomous we feel, our lives are inevitably interdependent with those of other. In social policy this is referred to as community. Now I’m not suggesting we add another word to our vocabulary of jargon, but ‘community’ itself has become so hackneyed with use over the years, and applied so widely as a balm to suggest something is safe, homely and genuine, that its usefulness has been devalued.

My point is that we need to find a better balance between independence and interdependence not only in what we aspire to in policy, but also in how we make it happen. So as a society we acknowledge that people sometimes need a lot of help to live in their own homes and make their own decisions, but somehow we assume that meeting the neighbours is something that will just happen.

So what are the implications for connectors? Well, perhaps the best way of helping people to meet their neighbours is not to think to long and hard about it, but just do it.

What are your thoughts, tips and experiences of helping someone to meet their neighbours?