Mindfulness - for those mindless stigma moments

Mindfulness is a potentially powerful way to still an unruly chaotic mind, ground during dissociative or flashback phases and pull out of the "I'm useless, everything is wrong" downward spirals. And for me at least, it works (sometimes, as one of an arsenal of tools).

Looking back, it's ironic that I learned mindfulness because mental health was seen as my problem. It was certainly my life getting screwed up, so in a very real way it was my problem. But in another sense, my mental health was problematic because of other people's response to me.

I am different. I hope I will always be different. I love myself as I am. And in learning that, my life stopped being screwed up - I stopped having a mental health problem and simply had a mental health difference. It wasn't mindfulness that got me to this point - that's another story for another day.

My point is that, these days, my biggest use of mindfulness is to handle other people's reactions when I stand up as someone with a long term mental health difference.

This is Mental Health Awareness Week. It has the theme of mindfulness.

Please promote awareness.

Please promote mindfulness as one tool among many.

Most of all, please,remember that most of the disabling, screwing-lives-up side of mental health is down to attitudes to mental health, not a mental health condition.

I love field work - especially when the technology works

With hindsight, I really should have double-checked before the meeting which button to press to start video recording...

It's strange the things we forget when we are under pressure! I'd had my training in how to use the camera from the wonderfully talented and excellent teachers at No27 Media. We had needed to start with "this is how to switch it on", and then we'd got a long way in a short time. And I had been practising how to edit footage since. I can now subtitle and get a video onto YouTube.

But...

Come the pressure of real life field work, and numpty me was floundering around having forgotten the second step. I got it switched to video. But then couldn't for the life of me remember how to start recording - although thankfully I did remember that a little red light would mean I'd found the right button.

Actually, it did no harm. Someone else was able to sort me out. And me floudering around certainly did a lot for undermining the default dynamic of "me powerful researcher, you less powerful participant".

Videoing is a interesting expereince, especially in a public area. I'd carefully selected and reserved a table where no-one could accidentally end up in shot. The camera was set up, and carefully checked to make sure no-one would walk past or appear in the background, but that all of us could be seen.

And then we had the interesting moment. Tucked away from us was a children's chalk board area. There was no chance of getting any of the kids on camera. They wouldn't walk near the camera lines to get to the chalk board. The camera was pointing away from the chalkboard area.

I have kids, so I really shouldn't have underestimated children's ingenuity, randomness and curiousity - or the desire to suddenly play tag under and round the cafe tables... That was the moment when the tripod got knocked off the carefully selected angle and little kids who haven't signed informed consent might possibly have ended up peering down the lens for a milli-second before I rescued and re-angled the camera. If that did happen, I'm going to be so grateful for that video editing lesson!

I didn't dare check last night whether the camera had actually recorded the meeting. I didn't even dare check that the voice recorder (my backup) had worked.

As it turns out, I am pleased to announce that despite my clumsiness and ignorance, my research is now the proud parent of almost two hours of footage. Wish me luck as I get transcribing and analysing!

What's in a label?

A facebook friend got me thinking.

He's doing an amazingly important piece of work, as chair of Cardiff People First, systematically checking out the feel and accessibility of pubs to help other people with learning difficulties to feel more confident to go out for a pint. But for some reason, he has been made to feel that this isn't "work" because it involves drinking a pint in a pub.

As a good qualitative researcher, how else is he supposed to check out the feel of a pub? He can't exactly go in with a questionnaire or check list - but if he had gone for that approach, then I'm sure no-one would have queried whether what  he was doing was work.

It's a bit like a certain person who is pretty unimpressed that I get paid to "drink coffee and gossip", so I have great sympathy with my facebook friend.

Now I don't know if my facebook friend has even heard the phrase "qualitative research", but he's doing a bloody good job at it as far as I can see.

I could rant a bit more about social attitudes towards qualitative and quantitative. But my facebook friend has to face another challenge to the value and validity of his work on top of the one faced by all of us qualitative researchers.

Because he has a learning difficulty, the definition of "work" becomes even more complicated. He's not just caught in the "qualitative is just playing around; quantitative is the real work". He's also caught in a Kafkaesque world where labels for things done in the daytime take on strange new meanings.

Common words used for what people with learning difficulties do in the daytime are:

• work 
• volunteering
• day placement
• student/trainee

If I use those terms of someone who doesn't have a learning difficulty, I make certain assumptions.

• If someone says they "work", I assume they get paid at least the minimum wage or perhaps they are self-employed.
• If someone says they "volunteer", I assume they choose whether to do it, and can choose to go and volunteer somewhere else.
• If someone says they have a "day placement", I'm not sure what I'd assume - I'd have to ask them a bit more about what they meant and what  they did.
• If someone says they are a student or trainee, I assume they are on a time-limited course with a qualification at the end.

Now enter the world of people with a learning difficulty. A few people, against the odds, can use these words with their everyday meaning.

The majority? Well, they get special meanings, along with their special "learning difficulty" label. And no-one seems to notice.

• If someone with a learning difficulty says they "work", chances are they get £20 a week and the organisation is paid to provide the "work" placement.
• If someone with a learning difficulty says they "volunteer", chances are they have no control over where they volunteer because there is a contract between two organisations that locks the person into "volunteering" in a fixed role in a fixed organisation.
• If someone with a learning difficulty says they have a "day placement", well that means they go to some kind of day service - maybe a day centre for leisure activities or more likely a social enterprise where they do something productive. Actually, most people with a learning difficulty who have a day placement with a social enterprise will tell you they have a job or go to work - and if they are lucky they get their £20 "pay packet" each week. 
• If someone with a learning difficulty says they are a student or trainee, it's a fair bet that they will be there for years, with no clear career path, qualifications or job at the end.

I'm very glad to say there are exceptions to this.

Yesterday the Guardian wrote about a shining example of TESS in Coventry. Cynically, from the article's title, I had assumed it was about yet another scheme to get people into paid work that only ever got people unpaid work experience or volunteering. I was so pleasantly surprised to be proved wrong. Sadly, it's threatened with closure.

In Wales, our NHS has been calling a spade a spade. Project Enable (check out 10:44 of the video and Joe Powell's comment) does not pretend to provide work. What it says it provides is internships - and they use the same meaning for internship as everyone else.

And Barod itself doesn't muck about with labels. When we say we are equal directors - we are. Doesn't matter if you do/don't have a learning difficulty label - the buck stops with you if you are a director.

So, back to my Facebook friend. He has to contend with the learning difficulty label and all the meanings that brings to the word "work",  On top of that, he has to contend with the common social assumption that quantitative research is real work - whereas us qualitative researchers are slackers who just "drink coffee and gossip".

And he still keeps going. Respect!

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.