Radical surgery needed

I promise no rants this time. But just to recap:

We don't need the sticking plaster of reasonable adjustments in Wales. We need radical surgery.

I believe it is possible for public life in Wales to become inclusive. But...

it requires a different way of seeing the world, different way of relating with ourselves and other people, different ways of planning and different ways of organising and doing stuff.

To me, that adds up to some pretty radical surgery for public life in Wales.

Pre-op

Step 1 is to believe that inclusive public life is a) possible, b) desirable and c) is stronger than a public life that excludes so many people. If you need help getting your head round that, check out the now-finished Evolve, part of Chwarae Teg's Agile Nation project.

Step 2 is to get your head round Shared Spaces, a way of thinking about how we relate.

Step 3 is to get the most diverse bunch of mystery shoppers possible to check out, honestly, what it's like to try to be part of public life. And then tell you. Don't be devastated; we know (most of) you didn't mean to shut so many people out; you just didn't realise what you were doing.

So far, so straightforward. There are routemaps, tools and examples for all the above.

Then the fun starts.

Planning for experimental surgery

Let's start off small. How do you organise an inclusive public meeting?

I will be honest. I don't know. I haven't been to one. And I don't claim to have run one.

What I do know is that I make assumptions whenever I organise anything. We all do. And the problems come because we unconsciously assume people are like us or people we know well. So our assumptions mean we come up with something that works for us, rather than works for anyone.

Here are a few assumptions I know I used to make. And I see these assumptions at almost every public meeting I go to. We don't even notice these assumptions because they are true for most people traditionally involved in public life. So when someone pops up who doesn't fit the mould we've made, we often get a bit flustered.

We usually (unconsciously) assume:

• people drive or have access to a car
• people are fully mobile
• people can hear
• people can see
• people can read and write
• people can listen, think and plan a response all at the same time
• people have enough stamina for an 8 hour working day with only few breaks
• people use language the same way as you, and know the same jargon
• people know when and how to break into a discussion to get heard
• people know what to wear (and have access to what they think they should wear)
• people can afford to cover their own expenses, or at least pay up front and wait to get the money back

You can probably add assumptions of your own - and please do add them in the comments. It's the old Johari window effect; The dangerous part of the window is where I'm not aware of what I don't know.We made a video about the whispering service - a way to include people who don't follow public-life-speak. And to our shame, it never crossed our minds to subtitle it because none of us in Barod is D/deaf. So we excluded a whole bunch of people from a video about how to include a another (probably overlapping) bunch of people. We are very grateful to some lovely twitter friends who gently pointed this out - and I'm learning how to subtitle and video edit so we can do something about it.

First attempts at radical surgery

As Barod, we are learning and developing prototypes for more inclusive ways of running meetings. Our wonderful friends at Good Practice Wales and Working With Not To give us opportunities to test them out. 

We routinely ask, when invited to discussion meetings, for a series of things that make it easier for Barod to take part:

• people's willingness to send information and presentations in advance so we can take time to prepare (so we have space to think, reflect and check things out in advance)
• people's tolerance if we need to ask someone to slow down, repeat what they said, rephrase what they said or allow one of us to double check we have understood (so we aren't left with a choice of embarrassment at asking or remaining clueless)
• an agreement whether speakers will keep things plain, clear, slow and jargon-free, or for Barod to provide a translator for anyone who struggles with standard public life speak (so we don't look stupid just because we can't process a stream of unfamiliar words quickly)
• a minute or two's gap between a presentation or question and the start of the discussion (so we can stop, think and decide what needs saying by us)
• for everyone to put their hand up and wait to be invited to speak by the Chair (so we know where to look before someone starts speaking, we aren't trying to follow multiple conversations and you don't need to be skilled at breaking into discussion without looking like you are interrupting)

Asking for this involves compromise on both sides. We aren't asking for the gold standard of accessible meetings for people with a learning difficulty [if you want to know more about what a gold standard meeting would be like, ask Barod!]. We are asking people to value us enough to make it possible for us to be part of their meeting. And we do suggest they try these things for all meetings, as experience shows it makes for better meetings for everyone.

Towards an inclusive future?

Experimental surgery is risky. It needs to be based on the best possible information, thinking, skills and expertise. So perhaps what we need is a bunch of people who, between us, fail to fit in with any of the assumptions. If we could work out how to work together on an equal footing, then we'd have the makings of a model for inclusive public life ready to test out. 

Any volunteers? (And any offers to pay foreveryone's time?)

The sticking plaster of reasonable adjustments

Warning! Rant alert!

"Hi, we've automatically excluded you by the way we do things around here. If you'd like to join our gang/use our services then you need to tell us. If you need a reasonable adjustment so you can join in (where "reasonable" = we feel like doing it or the law says we must) then we will prove what wonderful people we are by making a special exception in your case and doing something differently."

How medical model can you get?

It's a fantastic way of saying "Let's focus on the individual we have disabled as if they are the problem. And we will do this under the guise of being nice kind people who don't want to exclude anyone."

And that, my friends, is why I hate the term "reasonable adjustments".

(I promise a Part Two non-rant about solutions, but research work is calling and my timesheet says I must obey...)

The coproduction myth

I thought I'd offer to help a fellow student out yesterday. She's doing research about coproduction and, like the great research student she is, she wanted help to test an interview schedule.

I reckon I know a fair bit about coproduction (as part of Barod I've even led workshops about it called Shared Space). I'm opinionated, which always makes for a feisty semi-structured interview, and if we can't help each other out as fellow students then the world is a sorrier place than I believe it is.

What I hadn't expected was to learn something new about how I think about coproduction. Or, more accurately, talking together crystallised something I'd almost but not quite got round to thinking.

The interview was going fine from my point of view. The questions made sense. I could answer openly and honestly. I could have gone down a number of different avenues which suggested the interview schedule would work for anyone. I could hear in my answers that she was getting key information out of me quite naturally.

And then came "The Question".  I can't even remember what it was. But the way the question was phrased assumed that coproduction is a tool or process. And the question stumped me. I did a good goldfish impersonation.

Cue: Pause interview; Step out of roles as interviewee/interviewer; talk as fellow researchers about why I was stumped by the question.

Answer: I believe coproduction is a relationship, not a process or tool.

The moment I realised that, so much clicked into place about the coproduction myth. We talk about coproduction, we say it is happening. Public services tell us we are now going to coproduce. And most of what goes by the name of coproduction doesn't feel any different from good old fashioned user involvement, public engagement - pick the once-trendy label of your choice.

And perhaps that's because, if you try to codify coproduction and turn it into a tool or a process, you are almost inevitably commodifying it and making it into a "thing" that exists independent of the people involved. And if it is a "thing", then people don't need to change and relationships don't need to change - you just need to chuck this "thing" called coproduction into the mix and, hey presto, you now have something that has some of the hallmarks of coproduction but none of the feel or transformational impact of what I would call coproduction. And we end up with the myth of coproduction because we believe in the wonderful transforming concept of coproduction but however hard we search, it seems always just beyond our grasp.

If coproduction is a relationship, then we need to think about how people relate (and how people-in-systems relate to people-in-a-different-system). And how we relate is largely influenced by status, power, having things in common, a shared purpose, ability to communicate - and whether we like and trust each other enough to be open, honest and transparent in our relationship and determined enough to tackle the differences between our systems that make it difficult for us to work together.

So, huge thank you to KESS (Knowledge Economy Skills Scholarship) for funding my research and my fellow student's research because that's how we ended up having the encounter that resulted in this blog.

And if you love the thought of coproduction, check out Shared Spaces and get thinking about how you relate to people rather than what you can do to/with them.

Why can't social scientists and politicians communicate?

I'm not a communication expert, but I do know that communication requires:

• a shared language of some sort
• a desire to communicate 
• channels for communication

I believe in the principles behind the campaign for social science, even if I'm not convinced of everything on their website. So I do believe that social scientists and politicians (and the general public) need to be communicating.

I think there are barriers in the three communication ingredients I listed.

Social scientists have developed their own language. This includes specialise words, important for conveying precise, complex concepts in a single word or phrase (aka a good use of jargon). The same is true for politicians. but there is far more to the language than that. Parts of the language come from generations of social scientists playing safe and copying the language of their supervisors. Parts come from doing what you think needs to be done to get published in  peer-reviewed journals. And parts, I fear, do come from enjoying using language in a way that shows you are an insider (aka a bad use of jargon). Politicians do the same. 

Poor old Jo(e) Bloggs doesn't speak either language, so generally misses out on how social science and politics are relevant to his and her daily life. 

So perhaps the key is for social scientists and politicians to both learn how to convey their information using the kind of language people understand. This is going to mean settling for "good enough" rather than precise, and will almost definitely mean using visuals and cartoons to convey more complex information. But this way, everyone gets a rough idea of what's going on.

Is there a desire from social scientists and politicians to communicate. Well, perhaps. Maybe it's a bit one-sided, as I've heard a lot of social scientists wanting to communicate better with politicians but I haven't heard politicians clamouring to communicate better with social scientists. Maybe that's partly down to vested interests? After all, politicians control funding; social scientists need funding. Social scientists can provide ideas and evidence to inform political policies and actions; politicians may prefer to be able to profess ignorance and stick with their own ideas. 

And what about a channel for communication? It's unlikely to be either Hansard or peer-reviewed academic journals. Maybe everyone needs to take a leaf out of the book of the Speaker's commission on digital democracy and start thinking about how to get blogging, tweeting and facebooking our ideas - assuming we remember that they are called social media and not broadcast media. 

Out of these, I think the key is shared language (or lack of). If social science is serious about having impact outside the Academy, then there's a lot of work to be done on what is acceptable as "good enough" communication of research ideas and findings. Please don't start by developing better channels for communication. All that will do is mean that more people get the wrong impression of social science as Ivory Towers stuff with no relevance - and the same advice goes for politicians too.

Having and eating cake

This blog got me thinking again about blogs and blogging  http://blogs.lse.ac.uk/impactofsocialsciences/2015/03/09/books-vs-blogs-street-cred-formal-recognition/.

Why do I do research? Well, I have no choice. I love finding out, reflecting, drawing together what I see with sociological theory. I don't think I ever stop.

But why do academic research? That's harder to explain. I want to be able to depend on what I think and find out. That's because I want to give the world ammunition to change to become the kind of place where people can be people and be kind to each other.

And, rightly or wrongly, I identify academic research as a route to findings I can depend on and encourage people to use as a foundation for creating social change.

Cards on table: I don't think academic researchers have a great track record for setting the world ablaze through giving activists the fruit of their academic labour.

I reckon that's partly academics/activists speaking different languages, living in largely separate worlds and not communicating very well. I reckon it's also partly that much academic research is irrelevant to the urgent needs of activists for information or new ways of thinking about the world. And it's largely the need to meet the requirements of peer-reviewed journals, particularly those behind paywalls. That slows things down, restricts who can access the journal, and requires ways of presenting the information that are inaccessible to most people.

The communication issue is not necessarily a problem. If your aim is to build an academic research career, then peer reviewed papers in journals of high standing are essential.

But it is a problem for me. I want rigorous research that is strong enough to be the foundation for real societal change. I want to do research as a way to work backstage, sourcing and providing what is needed by the front stage actors. I can't be waiting for the peer review process. I don't choose to write in a way that excludes many, and I frankly don't have the time (or patience) to produce several accounts of the same iformation.

That means, for the main part, I need to be blogging, talking, mingling with the actors and making sure we have a good dialogue going. If gaining academic standing makes my backstage work more effective, I'm persuadable to do things the academic way.

But my focus will always be impact outside the Academy. My focus will always be taking the highest quality most dependable research findings and theorising out to the activists who need it.

That beings me back to thinking about why, despite the impetus for knowledge exchange, widening access and increasing impact, social science still bewails its lack of influence.

And here's the rub. I simply don't think you can have your peer-reviewed, behind paywalls cake AND eat your impact-outside-the Academy. They require different focus in how you approach your research, different language, different priorities for using time and - dare I say? - different ways of seeing the world and determining what's of value.

Why I've never done a PhD

I've had people suggesting, encouraging or pushing me towards a PhD for about 20 years.

I have been tempted. But I've always drawn back. It was never that I doubted my ability to produce work to PhD standard, although sometimes I doubted my character and ability to stick to the same thing for three years.

One reason has remained constant. If my main aim is to change the world, is it worth three years of my life to complete a PhD - bearing in mind that "good enough" research to help me and others change the world could be done in a much shorter time, albeit without the academic rigour or standing (but still of more rigour and value than, dare I say, much commissioned research),

The other reasons have changed down the years.

When I was 30, I thought I was too old to do another three years of study.

When I was 40, I rebelled against a society that gave extra value and status to the knowledge of people with a PhD compared to the knowledge of people who were living the lives being researched by those with PhDs. A few people I knew within disabled person led organisations did suggest there was a need for people like me to "infiltrate" academic life and take on the status symbols of that life so I could work from within to change how research happens. But although the idea of infiltration appealed, I lack the skills to be that person. I'm a bit of a bull in a china shop when it comes to politicking. I also know myself, and think if I had chosen this route, I would have "turned native" and begun to believe the myth that my knowledge had greater standing than someone else's because of my PhD.

By the time I was almost 50, I had rebelled against anything that involved bringing together the knowledge, insights, time and effort of many people but crediting only one of them with creating new knowledge. After all, why should only one person get their name on a PhD? Sadly, you can't award a PhD to a collective body, only an individual body. And, anyway, that might not be the full answer because it is important to recognise who has contributed what. While I am adamant that I don't want to take credit that isn't due to me, I am equally adamant that I should get credit that is due to me.

Who does what and who should be credited is something people can get heated about within inclusive research. So here's my position:

• there are different kinds of knowledge and skills. We need them all. If we don't need them all, then we shouldn't be working together as a team. So I don't agree with the "everyone does everything" approach. I believe in everyone using their knowledge and skills for a common purpose, and laying their knowledge and skills at the disposal of the rest of the team.
• some research-generated new knowledge is a team effort. If it's a team effort, the whole team gets equal status, acknowledgement and should have had equal pay while doing the work.
• some research-generated new knowledge depends on the additional work of one member of the team, as they take what the team came up with, re-interpret, add new insights and create something new based on their additional work. That could be someone with a learning difficulty taking the team's report, thinking about the needs of the self-advocacy movement, adding their personal insights to take the ideas of the report further and then presenting the information to the self-advocacy community. This could be someone with a PhD taking the team's report and writing a paper that re-frames the research in the light of a particular social theory. This could be a support worker, producing a training manual based on the research findings. And the person who has put in the additional effort should get the acknowledgement and status for this additional work.

And now I'm 50. 

I no longer think I'm too old to do a PhD. 

I've got to a place, thanks to Barod, where I don't need to worry about getting above my station and believing I'm special because I have a PhD. 

So can a PhD be done that attributes contributions fairly and accurately? I think it can - maybe. 

Imagine a research team. They work in line with the first two points I made about inclusive research. They co-author a number of publications. Then the third point kicks in. Anyone from the team could then choose to take the publications and use them as they wish, and be credited for that additional work. If anyone chose to do the additional work needed to turn the publications into a PhD by publication, then that person gets named on the PhD for that additional work. Could the solution be that simple? Right now, I don't know. But I could be about to find out. 

Watch this space!

Wading through, looking back.

I've got my protocol off to the research ethics committee. I can breathe a sigh of relief... at least until it comes back with comments.

By the time I did a final check and proofread, I could trace a nice neat journey from the quagmire of poorly articulated ideas where I had started to my nice neat protocol. I could tell a lovely, clear story of why everything is as it is. 

The only problem is that it wasn't a nice neat journey at all. I guess it couldn't be. I didn't have a final destination in mind when I started, just a set of things that needed finding out about. I hadn't even got a clear picture of what needed finding out, let alone how to do the research.

I started in an ill-defined, gloopy, shape-shifting quagmire where nothing was clear and every choice seemed to depend on other equally unclear choices.

I read, thought, talked, argued and, as I did, multiple options began to take shape in front of me. Possibly the most helpful thought as I darted all over the place was that sometimes it's not about justifying why we chose one approach or method, but justifying why we could reject the others. I think that's what finally stopped me vacillating between the options.

It is ultimately so satisfying to feel I have lined up a solid set of choices that work for me at every level: they work for my company partner, they work for a higher degree requirements, they work for the particular thing I'm investigating and - most importantly for my pleasure in this research - the methods and methodology line up nicely with my ontology so it no longer feels as if I'm trying to squeeze square pegs into round holes.

Looking back, I feel a bit like a pilgrim who has made it through the swamp and now surveys the path of their own making. Which is fine, as long as I don't see the tracks I made and believe I must have walked a pre-existent path.

And that is how this research will continue; wading through, looking back at the path I've created.Some journeys are all about the destination. Research has to involve describing the route, if only so people can make sense of your destination.

I think my greatest challenge will be keeping an accurate(ish) record of the wading through. So many dead ends, so many inter-related thoughts, so much serendipity. How to tell what's relevant and needs recording from what is flotsam? But if I wait until I'm out the other side to record things, I will never be able to remember the wading through. 

That's where my lovely A3 drawing pad comes into its own - and my essential cafe sessions. By doodling, drawing and scribbling, I have a snapshot of each stage of developing ideas. 

I'm still wondering how to apply that to my reading, reflecting and writing of other people's writings. If I find an answer that works for me, you will be the first to know!