Research questions and rivers

In the recent flooding, more than one river burst its banks so thoroughly that it lost any sense of having banks, and certainly no traces of the banks are visible to an observer. At this point, it is more a mass of water than anything identifiable as a river.

I can play for hours in water and I enjoy getting to understand the currents, the feel, the properties of that untrammelled water. But eventually, for the sake of the countryside, and in particular for the sake of making sure the water gets from A to B, we need that river back. In places, the water will find its own new channels through which to flow. In places, I will need to rebuild, channel and trammel the water into a river that flows where I want it to flow.

As with water, so with research questions. There’s a time for flooding – after all, the land can be much richer and productive after a good flood. As academics, we need space to let our brains overflow if we are going to be creative, imaginative researchers. But there’s also a time for safe, well-contained rivers. And crafting a research question is definitely one of those times.

It’s been a hard and frustrating couple of months with the PhD. I’ve felt as if I was getting somewhere, only to discover I was going round in overlapping circles. In the last few days, I think I’ve worked out both the source of the problem and a way to conceptualise the solution.

I have been filling my head with epistemology, ontology, ethics, standpoints, theoretical perspectives, methodologies, approaches, ways of seeing the world, ethical stances for a long time now. For a while, my river held as the water levels rose. Then it burst its banks – not hard as I tend not to build high flood defences. But then I continued adding a deluge of not-terribly-critical-but-highly-creative thinking to the swirling and increasingly murky water. I’ve been paddling around in the flood – sometimes swimming, sometimes half-drowning – for the last few months.

And yesterday I began to realise that this is why I cannot define my all-important research question.  I’d worked out over the last few weeks that the water was getting very murky and that my thinking might be creative but wasn’t very “researcher-like”.  But it was only in the last week, thanks to an amazingly perceptive (and patient) supervisor, that I caught sight of the serious threat posed by the flood and remembered I was supposed to be navigating a river. In practical terms, the realisation came via reflecting on a set of immensely helpful questions from my supervisor that she had sent to help me think through why I was going round in circles.  

The source of the problem, and the germ of the solution is this: If a research question acts as the river banks that determine the edge and course of the river, then it is impossible to craft a research question while still splashing and half-drowning on a flood plain.

So, back to basics. Yesterday, force myself to use a flow chart/table to funnel my thinking from an overarching topic down to a specific question, and from that the questions I will need to be able to ask of my data to answer that specific question. That really helped me work out the direction the river should be flowing. It also showed me that I’d been forgetting my overarching topic in the hunt for a workable research question. Simply looking wider broke through the blockage to focusing my sight more narrowly.

Today, I’ve gone back to a rigorous and focused overview of epistemology, theoretical perspective, methodology to remind myself where the river banks could lie. Next challenge is to work out where the banks need to be to get the river flowing in the direction I want – in other words to pick a suitable way of seeing the world and stick to it. In the process, I accept that I may realise I need the river to flow in a slightly different direction because of where I feel the need to put the banks.

Tomorrow, it’s time to double check that my methods suit the data I will need in order to answer the questions that my theoretical perspective allow me to ask. And if I manage that, then I reckon that’s the research question sewn up and I can knock off happily for the Christmas break. The challenge in the new year will be to reduce the volume of water (new ideas, creative stimuli) that fill up the river so it doesn’t go into flood again.  

The Wales We Want

I was party to a discussion recently that made me so angry. It made me realise the Wales we have is one where:

• If you have enough money to buy equipment for yourself, you aren't so disabled, but if you have to wait for the State to sort it out then you are stuffed
• If you have a parent who listens to you and has the ability to fight with you for what you want, you get the kind of support you need to lead the life you want. Otherwise, you get what you are given - and that's not much of a life, certainly not a life of independent living where you have choice, voice and at least some control over your own life.
• If you are dying, you can have extravagant wishes that people will help you fulfil, but otherwise wanting anything more than support to stay clean and alive is greedy.
• If you have a learning difficulty, you are expected to be grateful for 20 years of unpaid work experience; if you don't have a learning difficulty, then it's controversial enough to have to do the short term Work Programme of unpaid work experience.
• If you use a wheelchair part time and get out of it when you're out and about, it's ok for those who see you to vilify you for being a fake-disabled person either at the time to your face or in online forums & on social media later.

That is NOT the Wales I want.

This is not the Wales wanted in the SocialServices and Well-being Wales Act either.

If the Act is going to work, we don't just need The Services I Want - we are going to need The Wales I Want.
Is The Wales We Have really what the people of Wales want?

Come on Wales, let's get real about what disables people. It's not people's "disabilities" that disable them, it's The Wales We Have.

If you want to find out more about how we can have The Wales We Want - check out the new disabled people led research programme, DRILL UK.

Evidence and influence

If, as someone outside the policy bubble, you want to policy to change, I reckon you need both evidence and influence.  And you need to produce both on the terms valued by policy makers.

This blog started with thinking about ‘evidence-based policy making’, and wondering what people class as ‘evidence’. It was amazing to see people switch from talking about the importance of real experiences and hearing people’s stories to talking about statistics as soon as the word ‘evidence’ was introduced. In research terms, quantitative research findings = evidence.

For all my theorising, I can be extremely pragmatic. I might not equate ‘evidence’ with ‘statistics’ – but life is too short and the policy issues are too urgent to try to persuade people who make policy that ‘evidence’ has other meanings.

As someone outside the policy bubble, evidence in the form of statistics is a fantastic tool to have up your sleeve. It is easier to just accept that, by and large, evidence (statistics) plays at least a partial role in policy making. Depending on the civil servant, Minister and policy area, statistics will play a greater or lesser role in their decisions. Your ideas will be taken far more seriously when backed by evidence (statistics), if only because the person you talk to can wave your evidence under other people’s noses to justify their interest in and support of your idea. 

I’m genuinely not sure how far statistics drive the policy-making process, and how much they are used to justify pre-existing beliefs (what is often called ‘policy-based evidence’.  Either way, statistics are important to us outsiders for at least as long as policy makers equate evidence with statistics.

What I do know is that changing policies relies on both evidence and influence. 

So how do you  get influence? You tell stories. You explain impacts on real people’s real lives. In social research terms, you use qualitative research findings.  You use theories of culture and power to work out how to present those stories most effectively.

So – evidence and influence, numbers and stories, yin and yang. If you want to turn your ideas into ideas that will be adopted by policy makers, learn to use both. 

As researchers interested in social change, I’d argue we need to make sure we value both kinds of research and learn how to use them together for maximum policy impact.

As disabled activists, I’d argue we need to be canny and remember who we need to influence, how they make decisions and what will make it easiest for them to adopt our ideas.

As citizens of Wales, I'd argue we need to know how policy gets made in Wales - after all policy decisions in Cardiff effect everyone's everday lives. 

Why I’m not cut out to be an academic

Yesterday I created a short and ultra-basic presentation on “What is Research?”. Really, it was about the difference between ‘finding out’ and ‘doing research’.

Today I have been blogging, tweeting and thinking.

The penny has dropped.

I love finding out. I love ideas. I love listening to people who believe completely different things to me. I love picking up facts, information, ideas from spheres of live and academia that are brand new to me, and then I love playing around with them to see what patterns and new ideas they create.

And I really love wrestling with concepts and theories, then holding up lived experiences in one hand and concepts in the other. The fun is seeing what that does to the theory and what I make of (re-) interpreting the lived experience in the light of theory.

What I don’t like is the discipline of paperwork, the discipline of systematically finding out what others have already written on a topic, the discipline of focusing on a topic. In other words, I don’t like the things that turn ‘finding out’ into ‘academic research’.

Don’t get me wrong. I value research. I value disciplined and focused work. I just prefer to let others do it …

I much prefer to use my butterfly brain to visit all their pieces of high quality academic research, alight briefly, pick up ideas and move on to the next high quality blossom. As I do this, I tend to leave behind a little bit of the last few researchers’ pollen – so like to think I contribute to the cross-fertilization of ideas across academic silos.

Here’s the rub. I’m doing a PhD.  it was an MA by Research. You can get away with quite a bit of butterfly brain and avoid staring discipline straight in the eyes too often with an MA. But you can’t for a PhD.

Today I realise I am facing 22 months where I need to learn to be highly disciplined for 39 hours a week and stop ‘playing with ideas’. In some ways, it is just what I need - to give my brain a bit of a rest from fluttering around, cross-pollinating and creating ideas.  In other ways, I’m not sure how I feel about sticking to one thing just when I’ve been having so much fun playing with ideas.

So, 22 months of disciplined research to go. I wonder if I can allow the butterfly out for Gov Camps though ;) 

What *is* trust?

Last week was the first Bara Brith Camp. We had a great opener from Dyfrig about trust within organisations, based on the work of Professor Searle.  I love a good bit of dialectic because it makes me think, and I've certainly been thinking far more about trust since Dyfrig blogged about it and I blogged back.

I'll be honest, I lost track of Dyfrig's talk for a while when he said we "trust people like ourselves". That stopped me in my tracks because my instinct was to say that's not true. I may warm more towards people like myself. But trust?

Maybe my instinct just reveals a worrying distrust of myself and therefore anyone like me! But I think it runs deeper than that.

You see, in Barod, we are about as different from each other as you can imagine. We look different, we talk differently, we have different life experiences, different ways of thinking, different working styles, different priorities - and radically different beliefs about fundamental things like the meaning of life.

And yet these are the guys I've set up in business with. We've gone through a lot together. We trust each other at a profound level. We've had to trust each other deeply and riskily.

So I'm left pondering about who we trust and why. And rather than wait to come to a nice neat conclusion, I thought I'd inflict my ramblings on you.

• How much of what we commonly call 'trust' is more about being in a comfort zone of the familiar? That warm feeling towards people we like? I never trust comfort zones - at least not when the world needs changing. If trust is based on this, then it's not what we need for radical transformation.

• If we conflate 'trust' and 'people like ourselves' we end up with the Old Boys Network. After all, if we accept that we need trust in order to run organisations and countries, then if we trust those like ourselves of course we will preferentially recruit from people with the same backgrounds and life experiences. Bye-bye social mobility and social justice.

• What if trust wasn't about 'people like ourselves' but about 'sharing a vision'. We trust because we share a vision for a different Wales - and we've all put in enough and taken enough risks that we know, we trust, each of us is serious in sharing that vision. The basis for our trusting each other is that we have all regularly acted against our self-interest for the sake of the shared vision.

• What if we trust precisely because we are different, and our diversity is essential to achieving the shared vision? I think that's where our trust comes from in Barod. We believe each of us brings unique value precisely because we are so different from each other. And I get to exercise trust every time I accept I cannot understand or do something, but another worker in Barod can. A bit like muscles, trust grows as it is used.

So - two versions of trust.

• Trust because we are similar.
• Trust because we share a vision, and know we need each other's differentness to achieve the vision.

The 'similar/diversity' got me thinking about Agile and Traditional. Bear with me, as I haven't fully thought this out yet.

• Agile relies on small diverse teams.
• Traditional relies on silos of similarity with a tier of (similar) managers joining the silos together.
• Public services regularly talk about the need to break down silos.
• Any well-functioning organisation relies on trust.
• Organisational research on trust thinks about people trusting each other "because we similar'.

I wonder, I just wonder, whether it is so hard for public services to break out of silo thinking because people within them "trust people like ourselves".

If so, and I appreciate it is a big "if", might this mean we can break out of silos by redefining trust? Can we teach and encourage people to trust each other on the basis of a shared vision and acceptance that we need each other's differences to achieve the vision?

Back to you, Dyfrig!

Painting a policy

A painting requires a canvas, paint and a painter. Only when the three come together do you have a great painting.



A policy is like a painting. The community and individuals affected by the policy are like the canvas. The policy ideas, research evidence and examples from other contexts are like the paint. And the policy maker takes on the role of painter.



If you want a great painting, the painter needs to know his canvas and his paint intimately and possess the skills to work with both to create something that works.



If you want a great policy, the policy maker needs to know the community/individuals and the policy ideas/research evidence/examples intimately, and possess the skills to combine both into a policy that delivers. Just because the paint has worked on one kind of canvas, it does not mean that the paint will work on another.



Evidence-based policy making places great emphasis on the importance of the paint. Within evidence-based policy making, there has been little emphasis on the importance of the canvas. There has been even less emphasis on the importance of the painter other than as someone to administer the paint.



Coffee Conversations* assume the choice of canvas is fixed – that there is a context in which the policy will be implemented. Coffee Conversations aim to provide the painter with a feel for the canvas – the textures and ways the canvas will react with the paint. As well as the canvas, the painter needs to understand the nature of the paint available to him. What kind of evidence exists? Why is a new policy needed? What has happened in other contexts?


Only then is it safe to start to imagine the painting. And that’s where the individual painter’s skills come to the fore. However scientific, analytic and statistical the painter’s approach, however robust the research evidence, the finished painting will reflect the painter’s unique individual flair.


Barod does not pretend to provide a good understanding of the paint, and we don’t claim to be painters. But we do believe we are good at helping painters to understand canvases.


And one of our main tools for doing this is Coffee Conversations.


*Be patient - the research findings describing Coffee Conversations is almost ready for public release...

Trust

We need trust – and to be generally disposed to think positively about the other person – if we are going to take risks, innovate and act without needing to know every fine detail first.

Stop right there. Actually, that statement only applies to one kind of trust. Trust means we can rely on predicting someone's behaviour in a given situation. I can trust some really horrible people - because I know they will always be horrible in a certain type of situation. I can act on that belief with a high degree of certainty. And that kind of person is much easier to deal with than the person whose behaviour I cannot predict.

However, as we carry on, I'm going to assume we're talking about the positive kind of trust.

Well placed trust means risk-taking is a really positive experience, and when things go wrong (as they always will at some point when we take risks), we don’t immediately shift into ‘shift-the-blame’ or ‘told you so’ modes.

 

Misplaced trust is dangerous. Risk-taking based on that trust is a reckless act. I've done it. It hurt. It still hurts 10 years on.

 

How do I know in advance whether my trust is well placed or misplaced?

• Look at the past. Has the person or organisation been transparent, reliable and competent? Do they steal ideas, pass the blame buck or talk better than they deliver? Or do they have a track record that makes me believe I can trust them?

• Look at the present. Do others trust them? Sometimes we need to trust against other people’s opinions. But crowdsourcing trust is always a good idea.

• Look to the future. Are there outside pressures that are going to compromise a trustworthy person/organisation's ability to be trustworthy in the future?

 

Trust isn’t about trusting someone’s position in a hierarchy, their status, training or job title.

Trust isn’t about the wealth or power of an organisation.

Well placed trust is built on track record and careful observation of behaviour.

So look out, I’m watching you!

Why I refuse to be an asset...

I’ve been trying to think why I dislike the word “asset” when it is used  in the context  of what human beings bring to the table in terms of their community, public life and self-help.

I got some of the answers by asking people what “asset” meant to them. For some it meant being seen as valuable – “you’re such an asset”. For others, it was a term used in books and films to describe dehumanised and expendable people – like “CIA assets”. For many, particularly more middle class, it was about owning things and “looking after your assets”.

I don’t think I like any of those meanings. Whenever I’ve been told I’m an asset, it’s either the prelude to exploiting my good will or a justification for having just done that. It goes hand in hand with being patted  on the head for being a good girl. I definitely don’t like the idea of being expendable. And I don’t have much time for materialism and guarding stuff that I’ve accumulated.

So I guess it’s not surprising that I get uncomfortable with the current fashion for insisting that we talk about people’s assets or reminding ourselves that people are assets. 

My association of asset with exploitation  is increased because for all the talk of being assets and coproducing/co-working, it is exceedingly rare for anyone on the “you’re an asset” side of the table to get paid, whereas everyone on the “we’re the trend-setting public service” side is paid to be there. 

My voice, your voice

Voices matter.  Everyone's voice matters.

Co-production matters.  It's not just morally good. It's pragmatically good too.

But, for all the talk, sometimes we struggle to get our heads round what it looks like.

I wonder what life would be like in public service land if we were writing letters like this...

Dear Citizen

Sorry for the terrible title, but I can’t think of a better one at the moment. You aren’t just someone who uses our services but a person in your own right – same as I’m not just a service provider but a person in my own right. Isn’t it hard to find good titles for each other?

In the pre-coproduction world, I sat in my space and you sat in yours. Sometimes I came into your space to consult you. I only had a voice in your space if you chose to let me, but once in your space I admit I assumed I had a right to speak. And I guess I held most of the power because whether you liked me or not, the only way you got a voice was by letting me use my voice.

In the coproduction world, I need to learn a new way to use my voice. I need to remember I have no more right to speak than you. I need to learn to use my voice within a conversation of equals, and not to broadcast information.

Please bear with me as I learn to use my voice differently, and as I learn it is as important to hear your voice as to hear my own.

Best wishes

Jo Bloggs

Dear Professional

In the pre-coproduction world, I sat in my space and you sat in yours. Sometimes I came into your space because you invited me to a partnership board or service development group. I only had a voice there if you chose to let me have it. Sometimes I bulldozed my way in to lobby for something. I used my voice whether you liked it or not.

In the coproduction world, I need to learn a new way to use my voice. I no longer need your permission. And I do not need to fight to be heard.

Please bear with me as I learn to use my voice differently, and as I learn it is as important to hear your voice as to hear my own.

Best wishes

Joe Bloggs

Getting excited

I’m really excited to have been at the first DRILL NAG last Friday.

In English, that means I went to the first National Advisory Group for the Disability Research on Independent Livingand Learning Big Lottery Funded project. The five year project is run disabled people’s organisations from each of the four UK countries, and roughly next April there will be the first call for research proposals.

I’m not usually so excited to travel long distances to give my time for free. But some things are just worth it. Being on the Wales National Advisory Group means I am part of something that, hopefully, will challenge and push the boundaries of coproductive research. And it’s even more exciting to feel that I can contribute to the conceptual thinking about coproduction and research.

What we now need are people across Wales to come to one of the three roadshows that explain DRILL, coproduction and how people can get involved.

The coproduction bit goes something like this:

• Disabled people can be academics. But usually they aren’t. We need a shedload of disabled people who aren’t academics to come along to the roadshows and find out about the project. We also need some academics to come along, preferably ones who can ‘speak human’ or who are at least aware that accademicese is a language that most people in Wales don’t understand!
• We need non-academic disabled people and academics (disabled or not) at the roadshows who get the message that society-changing research needs both groups to work together on an equal basis.
• Everyone needs to be forgiving, willing to be honest and willing to tolerate a bit of discomfort. Whenever we try something new we are going to make mistakes. That doesn’t mean we are deliberately annoying people, ignoring them or discriminating against them. It means we are trying to do something we aren’t used to doing. In this case, DRILL is trying to get non-academic disabled people and academics to learn how to work together as equals. 

The National Advisory Group has already led the way. We’ve managed to have a productive first meeting of non-academic disabled people/carers, academic disabled people and academics who aren’t (yet!) disabled.  Our hope is that if we can manage to communicate and push boundaries, then maybe the roadshows can. And maybe the research proposals will. And maybe the research itself will. And…. just maybe, we are at the start of a journey that will transform Welsh society.

And if that’s not worth getting excited about, I don’t know what is!

The joy of trains

My life is stupidly busy. I’m a mum, wife, PhD student, company director, Crossfitter, community activist, active Christian, friend, thinker, NCIS-lover, cook, schmoozer.

If I have down time at home, I’m asleep (or watching NCIS).

If I’m in a fixed place – like the office or home – or simply out and about, I almost always have a fixed purpose. Even relaxation is timetabled and I have the pressure to ‘achieve’ relaxation.

And that’s why I like trains. It’s almost like stolen time. You budget the time for travelling. But unlike driving, you then have glorious me-time where you are shut away from the outside world – or at least you are when you travel North South in Wales with no wifi and only intermittent 3G or mobile signal.

One day I may use the journey for that mythical beast – relaxing over a good book. But until then, I enjoy the freedom to download my brain onto the computer. 

No, I’m not a cyborg, at least I don’t think I am! But I do have so much floating in my head that blogging, or diarising, or mind-mapping are essential tools for staying sane. And that isn’t something I can timetable into my daily life.

Somehow, being on a train is like a cocoon of other worldliness. I’m nowhere – not here, and not there. I have hours of time which I don’t need to account for to anyone because on the timesheet they are ‘travelling’. Being me, I can’t just switch off and ‘not exist’, so I turn my hand to whatever I fancy. Bits of jobs and paperwork get conquered. Today, my laptop’s desktop was finally cleaned up and my expenses claims got ready for posting.

So now, it’s blog time. Some I drafted on the last train journey have been refined. Some have been drafted. And, thanks to the wonders of Indycubing, I will be able to roll off the train, into a luxurious coffee-drenched, wifi rich haven and get these blogs scheduled. Bliss!

Trend-bucking in Wales

A week or so ago, there was a twitter exchange between @dylanjonesevans and @markjhooper about a Wales Online story.  In a nutshell, Wales is going to the States to find answers on how to build the Welsh economy. Some feel we could find the answers closer to home. The exchange made me think of Barod’s experiences of the industry that has built up around purporting to create or find jobs for people with learning disabilities. And I felt a blog coming on…

So - What do these have in common?

• Schemes to kick-start the Welsh economy
• Schemes to find paid work for people with learning difficulties/disabilities

The slightly cynical answer is “we spend shed loads of public money on it, with very little success”

The more biting answer is “it is a way for people to create work for themselves, while failing to achieve what they are funded to do”.

There are a few trend-buckers who don’t fit with either of those answers, but perhaps we are too busy throwing good money after bad to have the time or inclination to look at them. If we did, I think we would see that the trend-buckers share some characteristics.

You see, if I wanted to kick start the Welsh economy or see more people with learning difficulties in paid work, I’d start by finding our own examples of what  works and try to work out why. I’m about to give my best-guesses about the trend-buckers. But I wouldn’t want to stake my life, Wales’ prosperity or the lives of people with learning disabilities on my best-guesses. 

We need evidence and answers about what makes the trend-buckers succeed where so many larger, better funded projects are failing. Instead of this, what do we get? We get another chunk of public money chucked at another programme for economic regeneration, this time bringing in expertise from the United States.  And at the same time, we get more funding chucked at maintaining day services, training opportunities and supported employment agencies that, by and large, DON’T WORK.

I’m not arguing for no public funding. And I’m not arguing that there haven’t been occasions where public funding has delivered cost-effective benefit. I am arguing that we need  to stop doing the same things and dressing them up as innovative projects. We need  to start thinking differently and doing different things. And to do that, we need to examine examples where people are already doing different things, and learn from them ways to use public funding more effectively.

Welsh trend-buckers support wealth creation. This may be social wealth (like Carmarthenshire People First Job Club) or financial wealth (like Indycube). And perhaps a characteristic of trendbuckers is that they don’t actually separate the goals of social and financial wealth. 

The bad news is that we could’t round up Carmarthenshire People First Job Club to see how it works even if we wanted to. They scraped enough money for a short term project and haven’t found a new backer - yet. But they achieved more success on a shoestring than the multimillion pound publicly funded industry for job-finding for people with learning difficulties/disabilities. If anyone reading this fancies investing in social good (you will lose your financial investment - but your money will transform lives & benefit the Welsh economy) then I’d be delighted to put you in touch with the people who can make that happen. 

Let’s have a quick look at what I think Welsh trend-buckers seem to have in common.

• Different expectations of what counts as ‘normal’
• Driven by a commitment to changing the status quo
• Less ‘Let’s think outside of the box’ and more ‘Box? There’s a box?’
• Connecting  - ideas, people, organisations, infrastructure, technology
• Finding others who will look with them for solutions when the trend-buckers get stuck

Different expectations of normal

We will always tend to work towards whatever we think is normal.

If you are used to a 9 to 5 with a regular salary, sick pay and holidays, that  will be your normal. You are unlikely to recognise, understand or support what it takes to succeed as an entrepreneur.

If you are used to people with learning disabilities relying on benefits, that will be your normal. If you think they need protecting and sheltering, then that’s what  you will recreate even if you are paid to help them find real jobs.

No matter what you are funded to do, you will do it in a way that tends to work towards that norm.

So the trend-buckers are those with different expectations of normal. Their normal is the insecure, exhausting, exhilarating, hard work of starting a business that will succeed and grow. Their normal is knowing that the real barriers to real paid work for people with learning disabilities are the knowledge, skills and assumptions of employers, backed up by the attitudes of agencies, not any inadequacies of people with learning disabilities – so no amount of training, work preparation, support or job coaching of people with learning disabilities will result in real paid jobs.

Driven by a commitment to change the status quo

The trend-buckers are not in it for an easy life. They aren’t limiting what they do to what they are paid to do or the hours in their job description. And they certainly aren’t doing things because they are paid to do them. They are driven by a commitment to something – a cause, a value, a belief they can change Wales. And that commitment is strong enough to work ridiculously hard, make themselves vulnerable, keep chipping away against the odds and focus on the long game.

Box? What box?

I guess this is another version of different expectations of normal.

When Barod was started, I was the only one with experience of running a business. The others had no idea what ‘should’ be possible or normal. I had to think outside my box; they just had to think.  We didn’t know what was supposed to be possible, so just got on with doing ‘the impossible’ without realising it was ‘impossible’.

Others (like me) know there is a box, but refuse to acknowledge it beyond being aware that other people choose to live in it. Even people who think ‘outside the box’ are defined by the box and whether their thoughts are inside or outside of it. And that’s why simply thinking ‘outside the box’ isn’t going to lead to radically new and effective solutions.

I think that’s also why I like Barod’s Coffee Conversations. They make the general public’s ‘Box? What box?’ thinking accessible to people who run aspects of public life and public services. Ignorance can be dangerous – but it can also be a huge blessing if you want to escape established ways of working.

Connecting

I’m not talking old boys networks here. Those involve connecting, but in a self-limiting way. I’m talking hearing an idea in one context and wondering ‘what if?’ in relation to other contexts. I’m talking expecting to find something or someone of interest wherever I travel and whoever I meet. That could be the person on the checkout, fellow passengers on the train, keeping an eye on twitter or deliberately going to a conference and working the room.  And, when I talk of ‘working the room’, I’m talking expecting to find people and information of interest, expecting to give and receive, working to promote connectedness in general rather than make myself the centre of the hub.

I know I connect ideas, people and organisations differently and highly effectively. It’s a legacy from a first degree where I was encouraged for three years to join up the dots ignoring the order of the numbers by the dots to get a different picture from the one I was ‘supposed’ to create. It’s also because my personal neurodiversity involves living with a committee of different aged, skilled and gendered ‘people’ in my head. That certainly helps with making unusual connections!

I love neurodiversity. I cannot be thankful enough that people have their brains wired differently and we don’t all think the same way. It can be a pain if we live in a world that assumes all brains are wired the same way. But if we want to create economic and social change, we need diversity.

.

Others

These are perhaps the unsung heroes of many stories. Barod would not exist if someone from with the multi-million pound industry hadn’t recognised what we were trying to do and found a way to bend the rules to help us. Every other door in the industry had closed on us because we weren’t doing things the normal way and we certainly didn’t want to compromise our vision for the sake of their checklist, tickbox rules.

This one person found a way round the barrier that might easily have defeated us – the then Catch 22 that to get help from Access to Work, you must already be trading and off benefits, but as a disabled entrepreneur you couldn’t get  off benefits until you were trading and you couldn’t get trading without the kind of support only available through Access to Work. We are delighted  that the Government has removed this Catch 22 and you can get Access to Work support in the pre-trading stage now. We will never know whether our loud protests helped, but we like to think it may have.

These should not be the unsung heroes. They may not be the people directly transforming economic regeneration or job prospects for people with learning disabilities. But they are the people with the vision and willingness to open the doors for the people who are. Without anyone there to unlock doors, us entrepreneurs would have very sore heads from beating them against closed doors.

So – do we continue chucking money at projects that see more self-serving than wealth creating? Do we use strategies  that add to the wealth of  the elite while failing to transform local economies? Do we continue to create paid work for people who don’t have learning difficulties/disabilities while creating bonded unpaid labour for people with learning difficulties/disabilities?

Or is Wales ready to go look at the exceptions, the wealth creators, the trend-buckers, and see what can be learned from them?

My (disabled) identity

Who am I?

This blog was prompted by being ticked as ‘disabled’ by someone on a form. It’s not an identity I own. Here’s why…

Disability is about being dis-abled. Any disability I have is not located in me, my body, my brain. Rather, it is located in the stuff that makes up our society and our everyday living. It is about social structures, attitudes and assumptions that reduce my ability to participate in society on an equal footing with others.

That’s pretty standard ‘social model of disability’ stuff.  The social model of disability has served well as a statement of facts, re-orientation of thinking and rallying cry for people being dis-abled because their bodies, minds or health are seen as wrong, impaired or inconvenient. Without the social model, we would not be where we are today. Without it, many more people would accept society's labelling of them as second class and broken. 

But I’ve got two queries about this approach as I look into the future. First, if the key factor in disability is how society is organised, why do we reserve the term for occasions where our physical bodies, mind or general health are in conflict with the kinds of bodies, minds and health that society values and organised itself around?

Why not include other reasons for me being dis-abled?

·         I am dis-abled in terms of my low income.

·         I am dis-abled when I am discriminated against because I am a woman [and that opens a whole new debate. If one site of discrimination is because a woman’s body is the "wrong sort" of body in terms of how society organises itself, does that mean women should be included with people who have the “wrong sort of body” because they have fewer than four functioning limbs?].

If we insist that the term disabled people is only for people with impairments, then we are back to foregrounding the individual. There is no way we can play with language and pretend impairment is anything other than a deficit word. ‘Impairment’ sets us up to compare a fictitious norm with something less than the norm (not other or different, but less). I find the Indian term ‘inconvenience’ far less irritating. It recognises that some aspects of our bodies and brains can be incredibly inconvenient to us as we try to operate and thrive in a world that disables us.

My second problem with disabled identity is that I am me. I am unique. I have an identity as me. It is very difficult to pick one aspect of what makes me me and foreground it as THE aspect that should be the primary influence for how I interact with the world. When I met the legal criteria for being a disabled person (and actually I still do in many respects), that was not always the side of me that dominated how society and I interacted or the reasons I was dis-abled. I have attributes in common with David Cameron, my friend with Down Syndrome, Jeremy Corbyn, the woman in drug abuse recovery, the person who does not identify as male or female. And I face barriers to fulfilling my potential and being valued for me for all those reasons.  I have an identity. That identity is me. Me as a whole person. So that is why I have never accepted a disabled identity. 

Now, I will gladly be labelled and identified with others who share being disabled by a particular social barrier. Labels can make it easier to lobby and fight to get rid of that specific barrier. I’m particularly happy to publicly own a label that I could have hidden, because that label is highly stigmatized. I’m articulate, got great support networks and a strong sense of self and I have the luxury of the choice to hide that label and ‘pass’ as ‘normal’. By publicly sharing the label, I am challenging the stereotypes that go with the label, and standing in solidarity with people who cannot hid from their label. That does make sense to me.

But my fear is that, ultimately, this way of thinking will not create an inclusive society. An alternative approach is to challenge the ways of seeing the world that can make everyone's life more challenging, lead to most of us being dis-abled at some points of our lives and lead to some of us being dis-abled at every turn. The alternative approach says we have value, we are acceptable and we have an equal place in society because we exist. It says each person is unique, and labelling people into groups is meaningless. It says we need to find the most inclusive ways possible of relating to each other, working with each other and creating social ways of doing things. It sees diversity as a huge strength for society, and looks for ways to celebrate and enhance diversity rather than manage it.

In a nutshell:

·         We are all of value and all belong in society. So why not organise life to be inclusive for as many of us as possible, regardless of labels? The number of people being dis-abled would go down instantly.

·         Inclusivity means different practical actions for different people. But the bottom line is without inclusive attitudes and ways of seeing the world, practical actions alone won’t stop disability.

·         I don’t call myself disabled because I refuse to be dis-abled by society. But I make an exception to that rule when stereotypes and stigma need challenging

If anyone is curious about my ‘stigmatising label’, you’ll just have to read my other blogs ;)

Co-production of research

Co-production is pretty much what it says on the tin. It is co-(together-) production (producing something). It could apply to anything from me sitting with my daughter to produce a birthday card together, to a film unit making a documentary.

In public service jargon, it has more specialised (and highly disputed) meanings. It is variously used to describe a public service talking to people using the service, statutory bodies working with third sector bodies, a social worker and disabled person working out how the disabled person can get the support they want or a public service finding a way to work on an equal footing with members of the local community to make sure the community gets the services they want.  For what it’s worth, I reserve the term ‘co-production’ for the latter two usages, because the first is just a rebranding of engagement or involvement activity (ie have a say, but we control how much say you can have) and the second is already adequately covered by the concept of partnership working. What the latter two uses share is a disruption of social norms, reframing of relationships and an acknowledgement of shared power.

Co-production is increasingly used in relation to social research, frequently bringing its public service meanings. 

Co-production in social research currently overlaps concepts of emancipatory, inclusive, democratised and participatory research.  It includes collaborative research. And it overlaps much that is fundamental to the practice of good quality qualitative social research.  I would argue that you can’t do good quality qualitative research if you don’t at least check your interpretation with the people who gave you the data in the first place – ie if you don’t co-produce the analysis. [If you think you can, then the chances are that you are using a qualitative method with a positivist mindset and (I’d argue) this takes the point out of qualitative research - but thereby hangs another blog.]

Power

Both social research and public services face immense challenges in trying to renegotiate power relationships within structures that assign power, control and accountability to some and passive, dependent roles to others. In public services this is most clearly seen by the divide between those who are and aren’t employees of the organisation, between those deemed inside and those deemed outside information and data-sharing circles. In research, the divide is created by the drawing of the ethical approval/informed consent dividing line.

This social research non-negotiable dividing line is between relationships that  requires ethical approval and (signed) informed consent from one party before the relationship can begin, and relationships that exist on the academic side of the dividing line. For example, non-academics could be involved in co-production as joint applicants with an academic for a grant, putting both parties on the academic side of the line. In this situation, the relationship can begin, develop and flourish within needing ethical approval. Or the co-production could involve the kind of ongoing work on data interpretation found in some ethnography – where the members of the community under study become research participants (needing ethical approval) rather than research collaborators (on the academic side).  This has profound implications for nature of the relationship.

At times, decisions about which sides of the line to put the co-producers seem arbitrary. But once allocated a side, there are strict procedural rules to govern their research relationship. If the co-producers are on the same side of the line, there are ways to negotiate power dynamics that allow both parties to have equal voice, choice and control, while recognising the different skills, knowledges and experience each bring to the relationship.  Put the ‘co-producers’ on different sides of the line though  and –

And you have destroyed any chance of full-blown, transformative, meaningful co-production. You have diminished co-production to the level of choosing when and how to allow people to have a voice as research participants while retaining the power on the side of the academics.

What you may have is a better way of doing social research, because those being researched are allowed to have more voice within and about the research. This can only lead to better qualitative research.

But what you do not have is co-production. Nothing has changed in terms of

• power relationships within the research (academic chooses the extent to which participants can exercise power)
• attribution of the research when it is published (ie to the academic is named, usually with little or no acknowledgement of the essential role and crucial inputs of those on ‘the Other side’ of the procedural ethics line)
• disruption of social norms (it's business as usual, with the added warm glow on the academic side of empowering people and the desperate hope on the participant side that their voice has been heard and made a difference)
• challenging inequality between researcher and researched 

As part of talking co-production in research, therefore, we need to talk about the power dynamics that lie behind the procedural ethics of universities, NHS and other bodies.  We need to talk about what determines which side of the line people should be. We need to talk about relationship ethics, the ethics of interpretation, authorship and ownership.

I don’t have the answers to this. I don’t know how we carry out ethical co-productive research.

I do know that no-one wins when we use the term ‘co-production’ loosely because we think it adds credence to our research.

In the meantime, let's avoid the lazy and potentially misleading use of 'co-production' to describe our research, and make explicit the power dynamics, relational ethics and procedural ethics of our research relationships.

Down the rabbit hole

Yesterday I was sat quietly in a beautiful eatery trying to explain what I'd been up to in Cardiff.


The All Wales People First conference was easy enough - it was fantastic being there as people with learning difficulties from all over Wales got into radical politics, or rather got into Welsh politics in radical ways.


But Gov Camp Cymru? That was harder to explain. I still feel a little as if I fell down a rabbit hole and haven't quite emerged. It wasn't the 10-5 part of the Gov Camp. That part was huge fun, with some amazing conversations and everything you could hope to get when an unconference brings together people from radically different worlds but a shared interest in improving public services.


What I need to think through is the source of the rabbit hole experience - the socialising pre-camp and after-camp (and the after-after-camp - I slunk off when people headed for the after-after-after-camp).


The rabbit hole experience was being in conversation - admittedly well lubricated conversation - with people who I'd never usually meet, who talked of things I'd never heard, who socialised in ways I'd heard about but never really experienced, and who had no barriers to my being part of conversation and conversed with me as if I fully belonged with them.


Now, I'm used to being a hanger-on in environments where I don't belong, because that's how I observe, learn and form new connections between parts of my thinking/knowledge. In ethnographic terms, I'm great at being a participant-observer when I'm in unfamiliar settings and being an observant-participator in familiar everyday life. I have neat pigeon holes for those kind of social relationships, learning and reflecting.


It feels like going down the rabbit hole because my nice pigeon holes were disrupted. I'm sat here even as I blog, with head on one side, trying to work out what was so pleasantly but disorientatingly disruptive about the pre- and after-camp socialising.


I guess it felt a bit like being in an ethnomethodological breaching experiment. These where you deliberately act 'out of role', for example by going home to your family but acting as if you were a total stranger meeting them for the first time. [I wouldn't recommend trying it, but here's a description]. Breaching works because of something called Membership Categorisation Analysis. We automatically make people members of different categories, and we interact with them based on whether they are members or not of the same category. Now, whatever way we look at categorising people (and therefore who is a member of that category), we were not in the same category. And yet, they interacted with me as if I was. That is where the disorientation and disruption began.


I think I'm safe to assume that people weren't taking part in a breaching experiment without telling me.


So where does that leave me? I guess it leaves me wondering what category we share, a category that I didn't recognise but they did.


Or perhaps they were simply operating within a different Deleuzian paradigm where there are no categories. A sociology lecturer did warn me once that it was possible to get lost down an every-deepening vortex - a rabbit hole - unless I kept some kind of external bearings when contemplating work by Delueze, Derrida and other post* thinkers. He didn't warn me that some people actually live this way. A Deleuzian way of being would definitely fit with the snippets of conversation I actually understood and the style of conversing and relating with each other. Certainly that's far more probable than the chance we share a category that I didn't recognise.


And that's fascinating to me. Usually I'm the one pushing the boundaries for saying things aren't fixed and binary. But I hadn't realised until thinking & writing this blog how bound I am to using membership categorisation to make everyday sense of the world. For all that I think I'm post-structural, really I just peek down the rabbit hole while keeping my feet firmly in the garden.


And so I emerge from the rabbit hole. I've found a pigeon hole for the experience. And I will reflect, from my nice safe orderly garden, on whether the Alice-in-Wonderland world down the rabbit hole or the garden world above is the world that will lead to the radical social changes that I think are needed if Wales is to become truly inclusive for all.

Stuff you, stigma

I did a sponsored row the other night as part of Row 453, a fundraiser for the Veterans mental health charity Combat Stress. I am not a lover of military action. In fact I have done my share of campaigning against war, and find a lot of military/ex-military culture abhorrent. But anyone with mental health problems, for whatever reason, is a fellow human being. No-one should have to live without being loved and getting support when they need it. And so I took over an hour, in a busy and tiring week, to row and row and row until I'd hit 453 calories.

If I had blasted it, I would have ended up injured and failed. But I chipped away at it, calorie by calorie until the job was done. Blasting things is my usual method for tackling important things - go for it full volume, full commitment, full strength. It took real discipline to make myself go slower and chip away.

So - Stigma.

Stigma is a funny old thing. Even those who battle being stigmatised in one area can be as bad as anyone else at reinforcing stigma for others. "You shouldn't stigmatise me for being X; at least I'm not like one of those Y". You even get it in the disability rights world - I may not be able to use my legs, but at least I've got a brilliant mind. Yeh, great for destimatising disability for anyone with mental health or learning differences. And that kind of thinking is as old as the bible, if not older. Jesus had no sympathy with it, and neither do I.

That's why I'm determined to challenge stigma wherever I find it, even if it's not something where I have a personal connection, and even if someone is stigmatised about a characteristic, lifestyle choice or difference that I can't really understand or that goes against my way worldview. Because stuff you, stigma is a comment on stigma itself rather than a statement in support of people stigmatised for a particular reason in a particular way.

What's this got to do with Row 453?

Last night, as I rowed, it was a metaphor for living with mental illness. You have to pace yourself, you can't allow yourself the luxury of going for broke or you will implode, sometimes you have to keep going a minute at a time, sometimes you can think about keeping going for an hour or a day, you find strategies to get you through that next minute or hour. Some of the battle to keep going is within your head, but some of the battle is handling how other people change how they relate you when they know you have a mental illness and a lot of the battle is handling your self-image in the light of media reporting about mental illness.

Row 453 is raising money. and that's needed. Row 453 is also raising awareness. But perhaps what is also needed is a chance to stamp on the stigma. To say "stuff you, stigma" and be proud to be who you are. I am who I am. I live with mental illness - or neurodiversity - or a committee in my head - or whichever way I choose to describe it. I am still me, still human, still valued, loved.

Ah, if only it were that simple. Until we've got a bit further in challenging stigma as a society, there are still limits to how much I am comfortable making public about who I am, I'm still not willing to publicly talk in more detail about what it is like to be me/us. [But if you have  a genuine reason for wanting to know what dissociative identity is like, how my head is organised and who is inside it, I'm happy to talk one to one.] Because even in 2015 sometimes, for self-preservation, "stuff you, stigma" still needs to be chipped away at person to person rather than blasted with a public blog.

Many friends, colleagues - dare I say even Gov Camp Cymru fellow campers - live with mental illness that they can't publicly disclose because of stigma. How do I know? Because my being casually open about my brain gives them permission to talk casually about their own brains. The more we do this, the stronger we get. The stronger we get, the easier it will be to say stuff you, stigma.

ps, it's not too late to donate to Row 453 via https://www.justgiving.com/Row453 - and if you leave a message, say you heard about it from Anne from The Crossfit Place.
pps Combat Stress is the only veteran-specific charity I have supported, and that's because mental health problems really suck. [That's why I also support organisations like Freedom from Torture who work with victims of torture who manage to get to the UK for sanctuary and safety. And why I support SaneLine who are there out of hours when you need someone who understands when you don't understand yourself.]

Tale of two workshops

Tale of two workshops

We provide a Whispering Service. This interprets complex information, fast conversation or jargon into clear summaries so no-one is excluded because they need a bit more time to think, have difficulty following fast talk or lack specialised language.

We tested it at Gov Camp Cymru to see if it works at an unconference. It does. Phew!

We had explained the concept of the Whispering Service from the front during the housekeeping talk. 

We split up, and we picked our workshops. We had had a long chat over pre-conference coffee with one of the workshop leaders, so he had some idea what was going on. The other knew little or nothing about our little experiment.

The one who knew was quick to catch on to how to keep group dynamics comfortable while including us all. Full marks to him for that. We probably need a nice long debrief some time to get the most out of the learning. 

The poor guy who wasn't let into the secret found things discomforting, if not downright disrespectful. If you've never seen it (and how many people have!), Whispered interpretation can look as if we are having our own conversation and ignoring the group - uncomfortable for a leader and disrespectful of the group.

Whispered interpretation can also involve the whisperer raising a hand then pointing the person for whom they are interpreting. That's because it can be hard for someone to spot and push their way into a conversation to get their voice heard. The 'hand up and point' method solves that. But we will admit it isn't something we've seen in mainstream discussions before, so we can see why it was uncomfortable or puzzling for others.

At the after party, we were talking about the Whispering service and the penny dropped for the workshop leader. Fair play to the guy for not chucking us out of his workshop for disrespect (or, in 'unconference' language, for not encouraging us to use the law of two feet as we seemed to be neither giving not receiving much of the time).
And fair play to him for giving is an after party debrief on how it had felt for him.

And definitely fair play to Gov Camp Cymru for creating a safe space where we could attempt this experiment without worrying about it having long term negative consequences. I think that's probably because we have done away with so many of the social norms around conferences (like a fixed programme, smart clothes and work titles on our badges) that it's easier to be relaxed about things that are unexpected or make us uncomfortable - because we come expecting to be surprised.  

The experience did raise a more general principle for any occasion when we meet people who are not like us in some way, or when we encounter behaviour we don't understand: COMMUNICATE. Ask, explain, don't apologise, don't demand. As soon as the workshop leader knew What we'd been doing it made sense and he was fine about it. Without us saying or him asking, he was left discomforted by our behaviour. Gentle communication got rid of that discomfort because it brought shared understanding.

So please, let's make one of our post Gov Camp Cymru actions to be bold and communicate gently, clearly and respectfully rather than stay quiet for fear of offending or because we just don't think.

We can't promise we won't secretly test something next year - so if you are there in 2016 and Barod make you feel uncomfortable, gently ask us what we are up to this year.

(oh, and to the people involved in discussions about 'guerilla testing', I guess that's what we did - but that would be a whole other blog)

Money, credibility and coproduction

I got an email from SCIE today.

They had this link to a lovely new job as director of Think Local Act Personal (TLAP). I have a lot of time for TLAP, and they have some great case studies of doing things differently.

So I clicked the link http://www.scie.org.uk/erecruitment/advert.asp?vacancyid=153&utm_campaign=6146381_SCIE%20ebulletin%2010%20Sept%202015&utm_medium=email&utm_source=SCIE&utm_sfid=003G000002E7CLgIAN&utm_role=&dm_i=4O5,3NQKT,JI6RHO,D5PHQ,1

And I almost died of shock when I saw the salary. I reckoned it might be around £30,000, even £36,000 as it is a pretty responsible job because, although there aren't many staff to manage or systems to run, you get to help shape the future quality of public services and the job has a high profile.

I will let you click to see the figure (and have a think about applying). It was more than double my idea of a fair salary.

Quick aside: The rest of this may read like a rant against TLAP. It isn't. TLAP is probably much better than most organisations with the job of encouraging public bodies and large service providers to change how they relate to the people who use their services. So I do hope (if they read this) that they will be able to see past the rant to the real need for us to rethink how we value expertise, how we decide what (and who) is credible and how we get people with vastly different institutional/social status to accept their equal status as human beings and coproducers.

Having picked myself off the floor, I had a read to see what could justify such an exceedingly large salary. I think I found the clue here:
"The Director will already be recognised as having a high level of expertise and credibility in social care and/or health"

My guess is that they mean "The Director will already be recognised by chief execs and directors of public bodies and national service provider organisations as having etc"

Because sometimes, in those circles, credibility and high wages go together. I remember trying to work out why cash-strapped public bodies were willing to fork out enormous (in my sight) consultancy fees when they could have got someone else in to do the same work but without the gloss and at a tenth of the price. It's down to credibility. If you charge a lot, you are more credible. And if you are more credible then the people who gave you the contract probably think there's more chance that others will comply with your recommendations. And they may be right. It's a lot harder to justify wasting £30,000 by ignoring what a consultant advises than to justify wasting £3,000.

So, high salary = higher credibility with chief execs and directors of large provider organisations. I get that, even if I don't like that.

But the providers are only one side of the social care and/or health context.

I can't help feeling that the salary/credibility equation may not work for the people who use public services, the people who are on 'the other side' of coproduction. This side generally doesn't get paid at all for their coproductive work. And yet coproduction would fail without them. They may be called a "member of the public", a "citizen", a "service user". Now I hate to talk about sides when I'm talking coproduction, because the aim of coproduction is to work together on an equal footing, to create a shared space. But until that little fantasy becomes reality and I have to be identified with a side, then it's the unpaid side that I'd choose to be identified with. 

Does the high salary = higher credibility equation work in relation to them? I can think of twitter friends who bring immense insight, strategic thinking, humanity and expertise and can operate at the highest levels of leadership and who have a seat at the coproduction table because of their use of public services. And daily I see they not being given the credibility they should. Equally, they are very rarely (if every) paid as they should, and may even have to beg for expenses to be reimbursed. And I wonder again the extent to which credibility and pay are intertwined. Is their expertise treated as less credible because they aren't paid handsomely enough? Do the powers-that-be doubt the value of their expertise? - in which case, they should stop inviting those people and find people who do have the right expertise.

If you ask any of those twitter friends, they'd probably say (like me) that they do not judge someone's credibility by the size of their salary. 

So what does determine credibility with people on 'the other side'? How about:

• listening with an open mind and an open heart
• doing what you say
• seeing and engaging with people, not labels
• making it impossible to tell who is powerful and who isn't from how you treat them and speak of them
• doing what's needed and not what your job title says you should do
• doing what's needed, even if that means doing it in your own time (after all, that's what people on 'the other side' do all the time)
• looking for ways to stop institutional rules getting in the way of coproduction

I accept the Director post needs to be overpaid in order for him or her to have credibility with the chief execs etc. But I do hope the Director post will also demand the qualities that will give him or her credibility with the citizens who are involved in coproduction.

So let's hope the new Director manages to have credibility with both sides - and perhaps even has enough credibility to move everyone forward into the elusive 'shared space' where people give up allegiance to their sides, are rewarded on an equal basis and work together as one.