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.

The night before Gov Camp (well it was 2 days ago when I wrote this...)

Trains are a great time for blogging. Life has been so rushed, crowded and mind-boggling recently that I’ve been unable to take time to sit and unpick what’s in my head. But the last couple of days, my head exploded with the pressure of unformed thoughts and today, thank God (yep, I actually mean I’m thanking God, not using it as an expression), I have over four hours of peace, quiet, laptop and table on a train. Unfortunately, I don’t have over four hours of battery and there are no power sockets. So I need to get blogging quick!

Enjoy the offerings over the next few days. They’ve been brewing for a while. And I need to dump the ideas into blogs to make space in my head for tomorrow . Ah, tomorrow. Gov Camp Cymru, an annual Saturday ideas-fest extraordinaire in Cardiff.

It’s a bit hard to explain Gov Camp Cymru. I’ve only been to one. And I’m still not sure what  I make of it. There are no pre-arranged workshops in pre-arranged break-out rooms. We start the day with a few seconds to pitch our idea of a workshop, discussion or whatever. There’s a queue of people, some of whom have finely crafted seminars/workshops with amazing resources. Others have a bright idea or a knotty problem and just want to pick people’s brains. A few (too many!) want to show off something they’ve done or tout for business.  Each person gets 90 seconds to say what their idea is and why someone should come. Then their idea gets allocated a room and people vote with their feet. You may get no-one or a crowd.

But that’s only one side of Gov Camp Cymru. Another is that it happens on a Saturday, there are T-shirts available (for free) so most people end up dressed in a similar way, and the lanyard name badges ask for a first name and twitter name, not your full name and job title. It’s liberating, in a scary way, to have no idea if you are talking to a world expert with immense power or someone who was attracted by the smell of fresh coffee and thought of free beer afterwards. 

And another side is that we muck in together to make the day happen. I’m a fringe volunteer. I make the odd comment as things are being organised but otherwise I just show up & help out on the day. The volunteering reinforces the sense that we are there because we want to be part of changing Wales rather than because it’s part of our work.

And the final side is that last year, I confess, I hadn’t allocated time after Gov Camp Cymru to follow up on the ideas and contacts I made, or track down all the information I was signposted towards. And so I became part of the problem. I had a great time, amazing ideas – and a year later I have nothing concrete to show for it. So this year, I reckon I need to pitch to lead a session on “What has changed because of Gov Camp Cymru 2014?”. At least this year I’m prepared for the Gov Camp experience, so let’s hope I make better long term use of it than last year.

You give, I take - or it might not be ethical

- with thanks to Dr Sara Wheeler (Bangor University) for provoking me into thinking and writing

The researcher-researched relationship is complex. Although ‘researcher’ is fairly universally used for the person who initiates the research relationship, the term for ‘the researched’ is not. Indeed it is highly contested. If I choose to participate in someone else’s research, I might be their ‘subject’, ‘participant’, ‘co-researcher’ or something else depending on how ‘the researcher’ frames their research.

So what kind of relationship do these two people have, and how does that relate to what motivates ‘the researched’ to take part? And, most importantly in this context, what does ‘ethical’ mean?

My university ethics handbook requires any ‘researched’ person to give informed, freely-given, non-coerced consent to be part of the research. The ‘researched’ person must know they can withdraw at any time without giving a reason and without any comeback. There are particular concerns about anything that can be seen as an inducement to take part, or that could make the person feel obliged to take part or to continue taking part.

That’s fine as far as it goes. It ceases to be fine if it is used as an argument for avoiding any reciprocity in the relationship.

Some relationships are essentially impersonal and transactional, for example involving a payment for taking part. This can work fine for one-off experiments, tests and surveys. The researcher wants something from you (blood, time, filling in a form) and the researcher gives you money. You weigh up the (in)convenience to yourself, the payment and your interest in the research; you decide if you do or don’t want to take part.

Not all research can be so impersonal. And here is where the nature of the researcher/researched relationship and the motivation to take part in research move into murkier ethical water. This is quite separate from any considerations of how the relationship affect data collection and analysis – that’s for another blog!  

Rapport and transparency

Some kinds of research (ethnography, action research, inclusive/participatory research) require a personal relationship between researcher and researched. Or at least they require what is universally termed in handbooks on qualitative research as ‘rapport’.

Can we gain rapport and have a personal relationship in an ethical way, in a way that does not induce someone to take part nor blur the boundaries of the research relationship? Ethics rules out ‘fake friendship’, an accusation sometimes justly levelled at researchers who have understood the importance of rapport to collecting good data but who have used it more as a way to groom ‘the researched’ than to establish a genuine two-way rapport. And if we are to have genuine rapport, particularly where the relationship goes beyond a one-off meeting, how can it not involve genuine inter-personal exchanges?

To me, transparency is key to an ethical relationship. Both parties need to be aware from the start and throughout the research of what they bring to the research relationship, their own power and vulnerability, and the power and vulnerability of the other person. Both parties need to be very clear about the nature of the relationship, in particular its boundaries. This can only be done through on-going communication, starting with the informed consent information pack.

I would argue that transparency and clarity about the relationship and boundaries are probably more important than where the boundaries lie. If both parties know that this is an intense relationship involving considerable self-disclosure and sharing of knowledge/power/access but that it is time-limited and will cease when the research relationship ceases – well, that’s hard to pull off but as any short-term therapeutic community knows, it is possible provided both sides continually remind each other of the short-lived nature of the relationship and have an agreed formula or ritual to bring the relationship to a close.

Inducement and two-way transactions

The issue of inducement to take part and continue to take part in research has to be taken very seriously.

As a university, we accept that it is possible to give someone cash in exchange for taking part in research without that being an undue inducement to take part. The researcher gives cash and gains data. The researched gives something of themselves (blood, time, information) and gains cash.  It is a two-way transaction.

If this is acceptable, surely it must be possible for a researcher to give someone access to knowledge, ideas or practical help in exchange for taking part in research, without that being seen as unethical.

The difficulty, perhaps, is that impersonal, financial transactional relationships are easier to police than personal ones. It is easy to pay someone £10 and keep a financial audit trail. It is much harder to police yourself and to be policed by others where the transaction is personal.

If the issue is essentially one of policing, then I would suggest two possible approaches.

• One approach is to think in terms of child protection policies where an adult needs to work close and personally with a child or young person. One of the keys, particularly when the relationship involves personal transactions, is to have a third party who is aware of your interactions with that particular child. You might copy the third party into emails you send, and make sure the third party is aware of times you phone or meet the child and in particular anything you say, offer or do that could be misconstrued as “grooming” or stepping outside your professional role. Yes, it can feel bureaucratic and cumbersome, but it provides protection to everyone. It guards against accidentally slipping over the line into an inappropriate relationship while allowing a healthy personal relationship to develop.
• An alternative approach for research relationships might be to route any personal transactions via a more formal route, such as a TimeBank. By formalising the exchanges, it protects against ‘boundary-creep’, where the research relationship subtly shifts into a different kind of relationship without either party noticing until the boundary has been long breached. The ethical implications of providing knowledge/access/practical support become similar to the ethical implications of financial transactions.

Fear of breaching boundaries, fear of providing inducement to take part in research, fear of being unethical or unprofessional can lead to the very situation that the researcher is trying to avoid – exploitation of the ‘researched’. It can turn into the patently absurd “You give, I take – otherwise it might not be ethical”.

As researchers, we need to be extremely careful in our relationships. As researchers, we need to be transparent, honest and human. As researchers, we need to be accountable and auditable. But this does not mean we need to remove ourselves from our relationships with the people who we are researching. It does not mean we have to withhold who we are and what we know – particularly when the research relationship is ongoing. 

What we must always be is:

• transparent
• mindful of power and vulnerability

and make sure we always have a way to be held to account for our relationships in the field. 

Boggled eyes and fellow conspirators

There's only so much data you can look at before your eyes start focusing independently, or cease to focus at all.

I'm so so so lucky with my fellow conspirators (officially collaborators, but sometimes we feel a little more like conspirators). We talk, we think, we chip in. And we are uncompromsingly honest and humblingly (if that's a word) vulnerable with each other.

And we generate a LOT data.

I've just worked through a 54 page transcript for the second time. And that was from our shortest meeting.

So I'm giving my eyes a bit of a break to blog. I'm so glad I got thrown out of my Latin class and sent to the typing group in my distant youth. It means I can touch-type this while looking out of the lead glass windows of the Management Centre and across the Menai Straits to Anglesey so my poor eyes can relax and unwind.

I'm not sure if it is as easy for my brain to unwind. Half of me is blogging, and the other half is still thinking about the key categories and themes that seem to be emerging - that half of me is turning them over in my mind and wondering if they are keepers or for discarding as distractions.

I'm so glad it's not all up to me!

That's one of the joys of doing what is loosely a collaborative analytic autoethnography*. I don't have to come up with the answers. I can work with five perspectives, sometimes given independent of each other, sometimes given as we work together during discussions.

The downside for my poor boggled eyes is that I get five times the data to look through - repeatedly. I'm the only one of us who is trying to get a postgraduate qualification out of this, so I'm the only one who has to work quite so rigorously with the data.

Onwards and upwards - or deeper down the rabbit hole. Time to get back to those data.

*It's definitely collaborative. It's definitely analytic - with more than a touch of evocative from one of us. And it's ethnographic - I guess? I've never quite got my head round what makes something an ethnography. And we are writing personally about our personal experience and views. But unlike CAEs that I've read about, we are focusing on a single shared event (a "coffee shop conversation" rather than a life experience that has been part of each of our lives (like experience of oppression or motherhood or being disabled). It's also different from CAEs that I've read because I'm the only academic-ish person; my collaborators/conspirators are friends from outside the academy. 

To blog is to think (the joys of pre-coding)

I started blogging because I wanted to get practise in the art of writing and seeing what comes out.

I wanted to practise blogging because I know good research notes are vital for at least two reasons.

• We forget the facts and details when we finally come to write up our research, so we need notes written at the time to which we can refer. 
• Blogging to ourselves is about the only way to keep a record of our thought processes as we analyse our data. 

I've started data analysis and I'm blogging my thoughts as I go (into the same Word document that I'm using for my pre-coding data analysis work). And I can see just  how vital it is that I blog as a record of my thought processes. What I've done is

• read a transcript
• re-read and underline bits that look interesting
• type the interesting words/phrases into Word while roughly grouping words/phrases together
• go back over the groupings to see if they do group together enough to merit a heading (a kind of pre-code). 
• go off for a stiff coffee
• come back and looked at the groupings and headings and add some blog-type notes underneath each grouping
• have more coffee
• look at the groupings, look at the blog notes and (in many cases) add a second blog

and all of that is before I've even got to coding, or comparing transcripts.

What I didn't realise before I started blogging is that it is only as I put things into words that I realise what I am thinking. In fact, it's more than that. It is as I put things into words that I form my thinking; and as I hit the backspace key to re-draft the words, I am refining, changing and clarifying my thinking. The very act of blogging, of forcing myself to put things into words, creates my thinking. And in the same act of blogging, I get a record of what my thinking was.

So there are times in my transcript blogs when I've had to stop myself hitting the backspace key.  Instead, I add an extra bit in square brackets, because my first thought was valid as I thought it. And I need to keep that thought, captured for posterity (or at least until I've published the research), because it is part of the trail of how my thinking about the data has developed. I may never need to look back over that trail, although I think I will want to out of curiousity. But what is very sure is that if I ever did need to examine the trail, I could never recreate it because as soon as a thought has been superceded, I tend to forget it.

There you have it. Time for me to get back to the transcript blogs. I won't be inflicting any of those on you, having been to a fascinating talk about how anything that has been blogged online counts as having been published, so it becomes really complicated when you later want to use it in a research degree dissertation/thesis. Or something like that. Not sure I really understood!

Hope the detail of how I've done some of my pre-coding analysis is helpful to some of you. I'm not saying I've done my pre-coding brilliantly, but it can be really hard to find out what actually goes on between raw transcript and formal coding.