Talking to the GP

I've never tried talking to a GP about mental health before. 

There are many reasons, mostly because my work and life mean I've listened to GPs and other health professionals talking about people with mental health problems, and I've listened to people with mental health problems talking about GPs and other health professionals. Neither set of listenings have inspired confidence to even try talking to anyone in the NHS.

There's also my embarrassment, shame and sense of inadequacy that I've not self-managed my health adequately so need expert intervention. That's not specifically about mental health. I get the same feelings if I need to call on an expert for my asthma or eczema or a sports injury if I feel it's because of poor self-management. 

The fear factor for me was unique to mental health. It's one thing going to a GP and saying your asthma is uncontrolled. It's a different thing going to a GP and saying your anxiety (and voices) have exceeded your self-management skills. I was terrified that he'd hear the word 'voices' and hit the panic button.

But I went, taking my husband as my advocate. I went because I needed to get signed off work because I wasn't really safe to be there (for work read 'full time PhD student'). What being signed off also gives me is space where I don't need to do anything except focus on all the self-care things I need to do in order to get back to self-management. 

And for the first time, I accepted that I needed to bite the bullet and ask for some short term pharmaceutical help.

The appointment went well. I gave a three-point summary: my mental ill-health has exceeded my ability to self-manage; I need a medical note to give me a two month suspension of studies (which has already been agreed with the university), and I need something to take the edge off anxiety when it gets to the point I feel unsafe. 

And that excellent GP didn't miss a beat, didn't change his tone of voice, didn't even change his facial expression. He treated it just like my asthma or eczema had gone out of control. He asked a few relevant questions without sounding like he was reading from a script. He clearly knew about good self-management techniques (cos he checked I knew of them and was using the ones that worked for me!). He accepted my assessment of the situation (and my husband's filling in of details). He gave quick 'yes' answers to my two key points, ie there was no issue with the medical note and he had no problem with giving me a very small quantity of diazepam for short term use if/as needed. Then he talked with me a bit more about the longer term. And we agreed I would go to see him in two weeks so we could agree whether I'd got back to self-managing or, if not, for him to explain the longer term options.. 

I don't know how he came to be so excellent (I almost wonder if he has personal relevant experience), but three cheers for an excellent GP. By treating my illness as something as mundane as out-of-control asthma, he's helping me treat it that way too.

Intersectionality and privilege

I'd never be told to ‘check my privilege’ before. It was an eye opener.

 

It came about because I was challenged to think about intersectionality.

 

Inter-what?? Intersectionality has several meanings, all of which include a sense that ‘just because we are all X, it doesn’t mean we experience being X the same way’. Most meanings of intersectionality also talk of stigma and oppression, and how the totality of who we are will affect how we experience oppression in relation to any characteristic. For example, most writing about Black oppression is written from a man’s perspective, but Black oppression may be experienced very differently by a woman. Most writing about oppression of women is written from a White perspective, but oppression for being a woman may be experienced very differently if you are Black. Most writing about being disabled is written from a White man’s perspective and that’s not terribly helpful if you are a disabled Black woman.

 

You see, I have a number of stigmatising characteristics.

• I'm fat.
• I'm a woman (and to make that more stigmatising, I don't even behave like one - I don't wear make up or do my hair or nails).
• I have a long term mental health condition (entertainingly my other selves reject the ‘mental health condition’ label - we rather enjoy being a collective).
• I have a number of physical health problems that interfere with everyday life.
• I don't have a career or a proper job.
• I’m over 50

But despite those stigmas, I don't seem to experience the oppression that many people with one or more of those characteristics experience.

 

It's possible I've internalised oppression (so don't see oppression for what it is). And it's possible that I am in denial or that I subconsciously use avoidance tactics to make sure in never in a situation where those characteristics are relevant.

 

But I genuinely think I have avoided being oppressed (even though I have definitely come across people/circumstances that would have oppressed me - if I'd let them).

 

Pause, think:  If I'd let them….

 

And that's why I need to check my privilege. How privileged am I if I can avoid being oppressed?

 

I have a number of non-stigmatised characteristics, some of which confer privileges in contemporary Welsh culture.

• I'm white 
• I'm middle class  
• I’m well-educated 
• I speak (some) Welsh 
• I may be a woman, but I went to a majority boys independent school where I was never encouraged to see myself as different from the boys  
• I have a comfortable income (courtesy of husband) - oh, yes, there's another, I'm married to a man. 
• I'm not a carer of young children or older or disabled family members. 
• Oh, and I'm Christian – although based on how people react when I say that, I'm not sure whether that's stigmatising or privileging these days!

 

I think three features of my life stand out as privileged characteristics that over-ride the potential oppression of my stigmatising characteristics and allow me to refuse to let others oppress me:

• I went to Oxford University.  
• I do not rely on the benefits system. 
• I face life shoulder-to-shoulder with an amazing other half.

 

The Oxford University thing is so many privileges rolled into one.

 

The one-to-one tutorial system means I was taught to think, evaluate, critique, argue and stand up for my opinion.

 

The majority male environment continued the pattern set at secondary school of seeing myself as one of the crowd rather than ‘a girl’.

 

I knocked about with people who took power and privilege for granted, and who opened doors for me to see inside the powerful elite world of the very rich and very influential. Some of that confidence and assumption that you are worthy of respect rubbed off on me.

 

While I did not consider going to Oxford made me better than others, it was a very useful status symbol to bring out casually when needed. I tried to use it very sparingly. But it meant I got to talk to a senior government official in Hong Kong to sort a problem when a friend (a Filipina maid) told me about an issue affecting her and most of her friends.

 

Not relying on benefits. That is a huge privilege for anyone with long term mental ill health.

 

[my committee are likely to shoot me if I keep saying that – we would say: ‘for anyone who is neurodiverse’ because that’s the narrative that makes sense to us. It allows us to be powerful in being different, not powerful despite being different].

 

Back to the “not relying on benefits”. Having income (albeit mostly from being married to someone with a good income) means no debilitating fights with officialdom. No need to focus on what I’m not able to do, and why I’m ‘broken’ so I can fill in interminable forms. No constant fear of something going wrong with the system and being left destitute. No media portraying me as a charity case at best, and a work-shy, cheating, scrounging, fraudster at worst. I can’t imagine the day in, day out grind of negative messages about people who rely on benefits. It was bad enough when I was a part-time wheelchair user. I confess there were times I stayed sat in my chair in public because I couldn’t face another round of explanations, stares and tuts if I stood up to reach the can of beans on the top shelf in the supermarket.

 

Facing life shoulder-to-shoulder.

 

I don’t think it actually matters that my amazing other half is a man and that we are married. I think that what matters is that I am facing life with someone by my side. We have committed to each other, and we have honoured that commitment to each other for over 25 years. That level of commitment reduces the fear. It means in the self-doubting moments (of which there are many), I am reassured by someone I trust of the wonderfulness of being who I am. 

 

Thank you to the writer on intersectionality who reminded me to ‘check my privilege’.

 

Stopping to check has made me cringe to think of the times I have glibly told other women who share my ‘committee-in-our-head’ way of life that they just need to re-frame how they see themselves (ie think in terms of neurodiversity) and their oppression and stigma will start to recede as people interact with them differently. That might work if you have my privileges. But a new narrative won’t overcome the soul-destroying weight of relying on benefits and facing life alone. I have some apologies to make.

 

As I go into the future, I will be more aware of my privilege and my responsibility to use my privileges wisely. Privileges doesn’t mean I’m better. But it certainly means I get more doors opened for me.  My task is to get my foot in that door then hold the door open for anyone else who wants to get inside.  I wonder how the PhD can help with that.

 

Stop putting me at the centre!

Stop “putting people at the centre”!

 

I know you mean well, but can you please just stop it!

 

Everywhere I look, public services (especially health and social care) want to “put you at the centre” and “give you a voice”. It's part of the “new relationships” between users and providers of public services.

 

Well, there are two ways to be at the centre. You can be the spider controlling the web. Or you can be the object that the rest of the kids in the playground are circled around.

 

I lack the power to be at the centre of a social care web, pulling strings, making things happen. Would I want that kind of relationship with the social care workforce? Possibly, but that’s based on a history of not trusting public services and, while I understand my control-freak tendencies, I’m not proud of them. I need to learn to trust - but first I need evidence that it is safe and responsible to start trusting.

 

And I cringe at the idea of being the kid in the centre of the playground circle. Even if the kids who’ve put in the centre are benign, even if they are helpful, even if they have no intention of misusing their power – they are clearly on the outside staring at me, objectifying me, evaluating me, sizing me up.  

 

As far as I can tell, the playground circle is what is happening in social care. Those on the outside (the social care workforce) retain the power of controlling on what terms I can work with them. And they treat me as something qualitatively different from them for all the talk of partnership. As we meet in the roles of 'user' and 'provider', we become 'Other' to each other. Because, yes, I am guilty of treating social care workers as 'them', just as they are guilty of treating me as 'Other'.

The imagery of "putting people at the centre" just reinforces the fundamental inequality and Othering that Wales is trying to escape.

 

I certainly don’t think this is what the Social Services and Well-being (Wales) Act is supposed to be doing. But from what I read of briefings for the social care workforce, I fear the “putting people at the centre” approach is becoming engrained. In many ways I AM at the centre. I am the centre of my own life. No-one can put me there. I just am there. But when I need to relate with other people and work with other people, the imagery of being in the centre loses its power.

 

So PLEASE stop talking about putting me at the centre.  Maybe talk about you and I standing shoulder to shoulder. There’s a sense of equality and respect in being shoulder-to-shoulder.

'Giving voice'

I’ve been struggling with the concept of a PhD. So I decided to go back to basics and re-lay some foundations.

In the process I found I really helpful chart to match purpose for doing research with a research strategy (original from Martyn Denscombe’s The Good Research Guide), which I played around with slightly (based on John Hughes'. and Michael Crotty’s work):

Do I want a strategy to:

• Understand the complex relationship between factors in a particular social setting? – case study
• Describe cultural practices, and interpret social interaction within a culture? – ethnography
• Understand things through someone else’s eyes; describe the essence of a personal experience? Phenomenology
• Clarify concepts or produce new theories – grounded theory
• Explore a new topic and provide new insights – grounded theory
• Solve a practical problem – action research
• Produce guidelines for best practice – action research
• Give voice to individuals’ lives and their stories - narrative research

I was contemplating which was the right approach for me (personally) and which was the right approach for the research question (which would need to change if it didn’t lead to an approach that was right for me!!).

It got me thinking about the whole area of ‘giving voice”’. 

• Yes, I want people to have their voices, and have their voices heard.
• But do I want to be someone with the responsibility to ‘give voice’?
• Who am I to be giving people what is already theirs by right?

[There’s also the small philosophical issue of how anyone can ‘give voice’ accurately to someone else’s story, even when the stories are told by them using their own words and transcribed from an audio recording – but that’s for another blog]

And that got me thinking about disability and ‘inspiration porn’, and the ‘poverty porn’ that is little more than voyeurism under the cloak of being caring and compassionate.  That is often done with the intention of 'giving voice' to people, but is just telling stories about them.

If you aren’t sure what I mean by inspiration and poverty porn, it’s the kind of stories and research you see that objectifies people (hence the ‘porn’) while holding them up as objects of pity or inspiration. It makes the people who aren’t being objectified feel good about themselves, without calling for any change to an oppressive status quo.

Well, I’ve come to at least one decision from going back to basics.

I've done enough ‘giving voice’ to people who tell their stories, spill their guts, expose raw places, all in the hope that something will change for others (or themselves) as a result. I’ve done for almost 25 years as part of policy consultation work. I’ve done it on and off as part of social research. And I’ve read other people’s social research and consultation reports.  And I can count on one hand the times that people’s hopes of change have been realised.

So 2016 is the year I stop ‘giving voice’ to people. I refuse to be complicit in a game where people spill their guts to me in the usually fruitless hope of change.

2016 will be the year I work my socks off to find ways people can find and use their own voices, directly and effectively, have influence, create change and generally unsettle institutions that need unsettling.

I’m not sure that solves the problem of what strategy to use for my PhD research, but it has helped me work out what I don't want to do - and that's a good start.

It could be an interesting 2016.

Research questions and rivers

In the recent flooding, more than one river burst its banks so thoroughly that it lost any sense of having banks, and certainly no traces of the banks are visible to an observer. At this point, it is more a mass of water than anything identifiable as a river.

I can play for hours in water and I enjoy getting to understand the currents, the feel, the properties of that untrammelled water. But eventually, for the sake of the countryside, and in particular for the sake of making sure the water gets from A to B, we need that river back. In places, the water will find its own new channels through which to flow. In places, I will need to rebuild, channel and trammel the water into a river that flows where I want it to flow.

As with water, so with research questions. There’s a time for flooding – after all, the land can be much richer and productive after a good flood. As academics, we need space to let our brains overflow if we are going to be creative, imaginative researchers. But there’s also a time for safe, well-contained rivers. And crafting a research question is definitely one of those times.

It’s been a hard and frustrating couple of months with the PhD. I’ve felt as if I was getting somewhere, only to discover I was going round in overlapping circles. In the last few days, I think I’ve worked out both the source of the problem and a way to conceptualise the solution.

I have been filling my head with epistemology, ontology, ethics, standpoints, theoretical perspectives, methodologies, approaches, ways of seeing the world, ethical stances for a long time now. For a while, my river held as the water levels rose. Then it burst its banks – not hard as I tend not to build high flood defences. But then I continued adding a deluge of not-terribly-critical-but-highly-creative thinking to the swirling and increasingly murky water. I’ve been paddling around in the flood – sometimes swimming, sometimes half-drowning – for the last few months.

And yesterday I began to realise that this is why I cannot define my all-important research question.  I’d worked out over the last few weeks that the water was getting very murky and that my thinking might be creative but wasn’t very “researcher-like”.  But it was only in the last week, thanks to an amazingly perceptive (and patient) supervisor, that I caught sight of the serious threat posed by the flood and remembered I was supposed to be navigating a river. In practical terms, the realisation came via reflecting on a set of immensely helpful questions from my supervisor that she had sent to help me think through why I was going round in circles.  

The source of the problem, and the germ of the solution is this: If a research question acts as the river banks that determine the edge and course of the river, then it is impossible to craft a research question while still splashing and half-drowning on a flood plain.

So, back to basics. Yesterday, force myself to use a flow chart/table to funnel my thinking from an overarching topic down to a specific question, and from that the questions I will need to be able to ask of my data to answer that specific question. That really helped me work out the direction the river should be flowing. It also showed me that I’d been forgetting my overarching topic in the hunt for a workable research question. Simply looking wider broke through the blockage to focusing my sight more narrowly.

Today, I’ve gone back to a rigorous and focused overview of epistemology, theoretical perspective, methodology to remind myself where the river banks could lie. Next challenge is to work out where the banks need to be to get the river flowing in the direction I want – in other words to pick a suitable way of seeing the world and stick to it. In the process, I accept that I may realise I need the river to flow in a slightly different direction because of where I feel the need to put the banks.

Tomorrow, it’s time to double check that my methods suit the data I will need in order to answer the questions that my theoretical perspective allow me to ask. And if I manage that, then I reckon that’s the research question sewn up and I can knock off happily for the Christmas break. The challenge in the new year will be to reduce the volume of water (new ideas, creative stimuli) that fill up the river so it doesn’t go into flood again.  

The Wales We Want

I was party to a discussion recently that made me so angry. It made me realise the Wales we have is one where:

• If you have enough money to buy equipment for yourself, you aren't so disabled, but if you have to wait for the State to sort it out then you are stuffed
• If you have a parent who listens to you and has the ability to fight with you for what you want, you get the kind of support you need to lead the life you want. Otherwise, you get what you are given - and that's not much of a life, certainly not a life of independent living where you have choice, voice and at least some control over your own life.
• If you are dying, you can have extravagant wishes that people will help you fulfil, but otherwise wanting anything more than support to stay clean and alive is greedy.
• If you have a learning difficulty, you are expected to be grateful for 20 years of unpaid work experience; if you don't have a learning difficulty, then it's controversial enough to have to do the short term Work Programme of unpaid work experience.
• If you use a wheelchair part time and get out of it when you're out and about, it's ok for those who see you to vilify you for being a fake-disabled person either at the time to your face or in online forums & on social media later.

That is NOT the Wales I want.

This is not the Wales wanted in the SocialServices and Well-being Wales Act either.

If the Act is going to work, we don't just need The Services I Want - we are going to need The Wales I Want.
Is The Wales We Have really what the people of Wales want?

Come on Wales, let's get real about what disables people. It's not people's "disabilities" that disable them, it's The Wales We Have.

If you want to find out more about how we can have The Wales We Want - check out the new disabled people led research programme, DRILL UK.

Evidence and influence

If, as someone outside the policy bubble, you want to policy to change, I reckon you need both evidence and influence.  And you need to produce both on the terms valued by policy makers.

This blog started with thinking about ‘evidence-based policy making’, and wondering what people class as ‘evidence’. It was amazing to see people switch from talking about the importance of real experiences and hearing people’s stories to talking about statistics as soon as the word ‘evidence’ was introduced. In research terms, quantitative research findings = evidence.

For all my theorising, I can be extremely pragmatic. I might not equate ‘evidence’ with ‘statistics’ – but life is too short and the policy issues are too urgent to try to persuade people who make policy that ‘evidence’ has other meanings.

As someone outside the policy bubble, evidence in the form of statistics is a fantastic tool to have up your sleeve. It is easier to just accept that, by and large, evidence (statistics) plays at least a partial role in policy making. Depending on the civil servant, Minister and policy area, statistics will play a greater or lesser role in their decisions. Your ideas will be taken far more seriously when backed by evidence (statistics), if only because the person you talk to can wave your evidence under other people’s noses to justify their interest in and support of your idea. 

I’m genuinely not sure how far statistics drive the policy-making process, and how much they are used to justify pre-existing beliefs (what is often called ‘policy-based evidence’.  Either way, statistics are important to us outsiders for at least as long as policy makers equate evidence with statistics.

What I do know is that changing policies relies on both evidence and influence. 

So how do you  get influence? You tell stories. You explain impacts on real people’s real lives. In social research terms, you use qualitative research findings.  You use theories of culture and power to work out how to present those stories most effectively.

So – evidence and influence, numbers and stories, yin and yang. If you want to turn your ideas into ideas that will be adopted by policy makers, learn to use both. 

As researchers interested in social change, I’d argue we need to make sure we value both kinds of research and learn how to use them together for maximum policy impact.

As disabled activists, I’d argue we need to be canny and remember who we need to influence, how they make decisions and what will make it easiest for them to adopt our ideas.

As citizens of Wales, I'd argue we need to know how policy gets made in Wales - after all policy decisions in Cardiff effect everyone's everday lives.