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.