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.