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When What ‘Holds Us Back’ is What Holds Us Up

Country scene with sun rise peeking between trees.

…feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we’re holding back. They teach us to perk up and lean in when we feel we’d rather collapse and back away. They’re like messengers that show us, with terrifying clarity, exactly where we’re stuck. This very moment is the perfect teacher, and, lucky for us, it’s with us wherever we are.

Pema Chodron, When Things Fall Apart

Legs seems to be in the news a lot these days. Women’s legs of course. It’s hard to imagine a man’s legs giving cause for so many miles of copy to be written opining on the relationship between legs and character or judgement or worth or ability to undertake a professional task. As I watched the misogynistic marginalia that so often masquerades as journalism these days scroll by, I found my mind wandering back a few years.

“Oh poor thing, how sad for it. Do you want me to work on it too?” An unlikely sentence to precipitate an emotional outpouring. But precipitate an outpouring it did. For the first time since I had acquired the MS nerve damage that had (despite my best efforts at exercising it) been eating away the muscles in my left leg and reducing my ability to lift my foot properly, my left leg was to be the object of my compassion, and later my pride and gratitude.

I’d gone for a massage on my right leg, just my right leg I had firmly told her. My “good leg”. Doing so much work to compensate for my “bad leg’ was creating a lot of wear and tear on it. Needless to say, my right leg had come to feel supremely important. Without it walking would be impossible. I spent huge amounts of time thinking about it. Worrying about it. Every niggle or spasm overthought. Every cut or scratch or bump over-attended too. Care lavished on it. My other leg was an afterthought, or more accurately a banished thought. I couldn’t bear to look at it, I hated the feel of it – so different from the other leg which was free of the loss of sensation both touch and proprioceptive that afflicted the left.

When that physiotherapist referred so caringly to my left leg I was overwhelmed by the realisation of how much I had disassociated myself from my “weakness”. From this thing I dragged around with me everyday. The thing that slowed me, caused so much pain and discomfort, kept me awake at night, pulled me off balance, stopped me doing so many of things I once loved. ‘What doesn’t kill us makes us stronger’ was missing a coda as far as I was concerned:   ‘though we will harbour ill will towards it nonetheless’. But with that physio’s words, like a cork un-skilfully loosed from a Champagne bottle, all my conflicted, sad, angry, confused feelings about being impaired bubbled over. My physio reassured me quickly, telling me this happened a lot. Having someone else touch caringly the thing that you have come to hate often unlocked strong emotions.

I can’t say my negative feelings about my left leg changed over night. But slowly over time I learnt to listen to the things it wanted to tell me. That it was strong in a different way. That it responded to love and attention just as much as my other leg. That it may be impaired but it’s still a part of me, still has a role to play in my life. Just not the role I thought it would play. That it had things to teach me still. Reading so many articles focussing on womens’ appearances and not their actions I was reminded of that day in the physio room. Reminded of how easy it is to fall for the crude stereotypes so much of society seeks to force down our throats. Good and bad. Worthy and not worthy. Useful and not useful. Valued and not valued.

I was also reminded of this again recently watching the video of a dad talking about his feelings about his child with Down’s Syndrome. Reacting to his failure to explain clearly to someone that his child’s difference brought joy and beauty to his life, he was overwhelmed with the emotion of realising that in a world full of prescribed boxes for right and wrong, good and bad (people, behaviour, abilities) the world was refusing to know that his child’s difference was not a source of shame but of power and love. That he was being lifted up by the thing so many thought was holding him back.

It’s a realisation I recognise from my life as a parent too. I seem to spend so much of my time trying to stop myself and others putting my children into boxes. Trying to undo the damage we inflict on ourselves and others when we buy lazily into those stereotypes and narratives. Trying to see what is really there, and not what I have been pre-programmed to see, to value, to love. Allowing myself to be held by their uniqueness, their being, and not hold back by some pre-determined notion of what and how they should be. 

It’s not easy to shake off those stereotypes of course. I slip often. My MS relapsed recently and as I emerge from that time my resolve to treat MS as a part of me and a valued teacher weakens, as it often does. When a relapse pops up I get pre-occupied by being busy ‘coping’. It’s when it begins to remit that my fears and lazy, infected, thinking fill my mind with thoughts of weakness, fill my heart with fears and anxieties. Those lazy, misogynistic accounts of women’s actions reminded us that society will still try to use their gender against them. Just as the fact that they are not bowed or stopped by the reaction reminds us all that try as you might using a women’s gender to ascribe weakness or any other negative trait or behavior is no longer a guarantee that you will hold them back.

My left leg, my children, each new day, all are constantly teaching me that what the world wants us to think is holding us back is often the very thing that holds us up. We just need to remember to stop now and again and look carefully in the very moment.

Choose Equality – For Your Future Self

Purple background with the words choose equality in large white text To and fro he lurched, his large electric wheelchair bashing into the enormous space for luggage that complicated his exit route. That he’d got that far was actually quite something. The positioning of the ‘wheelchair space’ (its occupant just an afterthought) was so awkward I was amazed he’d got in there still less out. Behind me I could hear tutting and an exasperated “oh come on”.

The woman he was travelling with was encouraging him with an admirable, but I knew fake, ability to ignore the rising tension around her and outside. It was stubbornness and the swallowing of anger that was getting her past the collective willing of her to just take control and shove him of the bus quickly. This was his chair, his journey. It was not in fact his (quite severe) disability that was the issue. It was the design of the bus. Brand new and yet, as she noted loudly, much harder for people in wheelchairs to access than the old design.

The seats were more comfortable, for the able bodied. Fewer handles and poles, a narrower corridor, all making the space for the able bodied easier to access. A larger and more awkward luggage space favouring those able to carry luggage. But for the elderly and the disabled? Progress, as the saying goes, is unevenly distributed.

As he finally made it to the door he met his biggest challenge. The tight angle made it almost impossible for him to get the right positioning for the ramp. Several attempts finally resulted in near tragedy as the wheels slipped and the chair tipped forward. A woman outside managed to steady it and his companion – alternating between apology and astonishment that people were not leaping to help more quickly, corralled people into action “I need a couple of men, come on! Lift it down!”. At last he was liberated from the bus and we could continue.

A woman behind me muttered to her companion – “I don’t know what this country is coming too.” But her tone told me that the object of her complaint was not the same as mine. My mind wandered back to a visit just before Christmas to a large department store in a recently built building. Looking for the disabled toilets in vain (the signage was very poor) I was finally pointed to a hidden away spot.

The ‘disabled toilet’ was small and the arrangement of the facilities (in common with most disabled toilets I’ve been in) impossible for all but the most physically strong person in the smallest manual wheelchair to get on to. The toilet was right next to a spa treatment room, which probably explained why what little space there was also served as storage space for oils and towels and the other accoutrements of the self-indulgence industry. The irony of the unguents of the pampered well preventing those whose bodies are a constant source of pain and discomfort (that no ‘hot stone therapy’ will ever put right) from going to the toilet was not lost on me.

I wonder if it’s a time for a National Let’s Pretend We’re Disabled Day? A day for all those whose bodies function within ‘normal parameters’ to spend every moment imagining how their environment, how their day, would feel if they had a disability. Would it help? Would we all suddenly feel the sense of rage and anger and shame and sheer bloody exhaustion that so many disabled people feel every day trying to navigate a world that for all our advances still chooses to disable us.

For it is a choice. Choose luggage space, choose storage space, choose more comfort for healthy travellers, choose to spend money on new sofas for your able bodied staff instead of accessible doors for your disabled staff. Or choose equality. Choose equality because one day almost every single able bodied person won’t need to pretend to be disabled. They will be. If disease or illness or accident doesn’t disable you, old age almost certainly will.

Choose equality. For your future self.

 

 

 

 

 

 

 

 

 

 

I

A New Day

Was it just last night? We three, sat there, safe in each other’s open and curious minds?

Ideas and laughter were flowing, eyes sparkling as we bounced around ideas for fun direct actions to tackle the daily experiences of discrimination we had experienced as disabled people trying to manage in a world that still does its very best to put the disabled in disabled people. We felt angry, excited, amused and energised.

‘I know this feeling, I remember this.’

All those years ago sitting in cafes and bars planning marches, events, actions to tackle LGBTI discrimination. My body tingles with a visceral memory of those days, those hard, exciting, scary times. The mid 80s in Scotland were not a comfortable or even a safe place to be a young lesbian. We lived with fear and violence and discrimination every day. We were angry, but we were also joyous. Why is it so hard to feel like that now? Is it because I am older?

‘Don’t be stupid. You know why. You know why this hurts so much…’

We looked at each other and understood how important this was, to talk like this. To let out the anger and fear was good. But there was something else… We were letting out the hurt. The hurt at how unjust the world’s apparent inability to notice all this was. All the able bodied people who seem incapable of really taking on board what it is to haul ourselves through a world with endless barriers. How it feels navigating a journey full of obstacles only to find yet more as you try to get into your place of work. How it felt to piss yourself on a train for want of a disabled access toilet. How it felt to be stared at with anger and disgust and fear intermingling. But there was something else. Deeper. Darker. More shameful.

‘Come on Cat, say it. Name it. You know what it is. You can trust these women. They can hear this.’

She asked the question I knew the answer to but felt so afraid to say. I said it. Safe here with these amazing women.
“It’s because it’s not joyous. When I was a kid fighting for gay rights I was fighting for love, for joy. Fighting to be allowed to do the thing that made me happiest. But now I am ‘fighting’ for the right to be marginally less unhappy. Fighting for something I wish with all my being I wasn’t. Fighting to be treated equally as kind of person I wish I wasn’t. Ashamed that I have to ask for these things. Terrified of why I have to ask for these things.”

I saw it flash across her eyes – the recognition. My heart sighed contentedly and I instantly felt less pained, less ashamed, less distressed. In that moment I knew everything had changed, would change. My struggle to be a disabled rights campaigner was about to shift gear. I was home.

Today is a new day. Today is a joyous day.

 

 

 

 

Living in an Age of Uncertainty: Lessons in Swimming in Stormy Weather

I see it everywhere – recognise it. The challenge of living with uncertainty. For almost everyone I know the last year has left them feeling like the jigsaw pieces have been thrown up in the air, and they have no idea how they will land. I recognise it because it’s how I live everyday, and have done for years. Never knowing what my multiple sclerosis (MS) will bring that day, that week, that month. Never able to pretend that the future is fairly predictable, that my current cognitive and physical abilities will largely persist. Never lulled by the chimera of a life set to unfold along a fairly set path.

For reasons that I hope will become obvious I offer here some of my lessons on living in an age of uncertainty,  not as ‘tips’ or ‘tools’ but as reflections, told to myself, for my own aid alone. If they happen to interest or resonate with you, well that’s icing on the cake!

Lesson One – Name Your Territory

We all at some level accept that change and uncertainty are part of life. However the massive amounts of effort humanity puts in to avoiding those things betrays our discomfort, our fear. From building cultures to building walls, from organising ourselves to amusing ourselves to death, we have become ninja warriors of denial of the simple truth of life; that all, as the late Zygmut Bauman so beautifully suggested, is liquid. We truly do live our lives swimming in stormy weather, whether we recognise it or not. I see so many friends looking around for others to help, or guide, or accompany them as they learn to swim in these newly stormy seas and can’t help but feel a sense of dejá vu.

“OK. So I haven’t drunk anything. I don’t think I’m sick. I’m pretty sure the world is not rocking on its axis, and this wall doesn’t seem to be moving either. So what the hell…” I’d walked that wall near where I was staying many times. Not at night admittedly, and I had noticed that my usual sure-footedness seemed a bit less reliable than usual recently. But I’d put that down to the stress of the situation I was in. So why the hell couldn’t I do it tonight?

I’d learn why a year and a later. Meantime I just tried to right myself as best I could, and carry on as if nothing had changed. Was changing. It got me through the night, got me back to base. But as a strategy it was to cause me a whole heap of problems in the years to come. The levels of change and uncertainty I would soon learn were to be my lifetime’s companions I could never have anticipated back then on that wall. Still less standing in the rain outside a hospital a year and a half later, trying to understand what I just been told and finding myself woefully unready to be a person living with multiple sclerosis.

MS has taught me that when the pieces are permanently up in the air, step one is make it your uncertain world. I named my world the sea, my experience swimming in stormy weather. Almost immediately it felt less strange – after all walking with ease on land was now a distant memory.

Lesson Two – Make Your Own Lifebelt

I suspect the greatest gift MS has delivered is that doing this, writing to myself, is my lifebelt.

Like most travellers in a new land I felt impelled to look for guide books and lifebelts around me, and boy are there plenty of those. From online advice sites replete with everything from the bleedin’ obvious to quackery of the highest order and from the mountains of self-help and self-improvement books that overwhelm our railway and airport bookshops, I started to drown as I swam alone in a sea of abstract thinking and other people’s words. I lost sight of the only concrete thing I have, the only solid thing I have, to accompany me on this journey called life: my own thoughts about my own experiences filtered through my own history.

It was to take many years but eventually I understood that ‘the answer’ could not be found ‘out there’. Eventually I would connect the skills of observation and inquiry that my professional life as an ethnographer had gifted me with my love of writing and craft a lifebelt that fitted me perfectly. I learnt to sift out the noise, and in the stillness I learnt to do the most importat thing I could do for myself. I learnt to find my own words.

Being diagnosed with MS brings with it a language crafted my medical professionals, for medical professionals. A shorthand, as all professional languages are, that allows them to communicate amongst themselves. But without the years of education and the experience of daily use they had, as a patient suddenly I had to acquire these words. Words other people invented for what I was feeling, for what my body was doing to me. It’s not surprising it left me confused and afraid.

But there was more. I had to try to grapple with the languages of science and pseudo-science that accompany the tidal wave of therapy, support, self-help and improvement most of us will be quickly overwhelmed by whether we seek it or not. Is this depression or anxiety, or both? Am I sad, or is this grief? I went to therapists and found myself spending as long trying to learn ‘the right words’ (i.e. their words) for my feelings and experiences as I did trying to simply feel or live them. I quickly lost sight of the shores of my own understanding. It was lesson three that would guide me back.

Lesson Three – Keep Your Old Guides Close

Is it because it’s a new challenge we often feel so compelled to look for new guidebooks? Or are we just flighty creatures: blackbirds drawn to the latest shiny thing in the environment? Engulfed in other’s understandings and languages it’s easy to forget that we have our own experiences and history to help us with these changes..

MS doesn’t like to be overshadowed. It notices when I forget it, when the world around me has my attention. Ever the attention seeking narcissist, it’s decided to rear up and give me a shake. ‘Hey, look at me, I can make your arms and hands messed up too. Bet you didn’t see that one coming! Oh I’m sorry, have I made you scared again? Am I making life harder again? am I changing things for you again? Well good. You think you have this. Pah! Puny self-deluded human!”. The pattern, my pattern, kicks in. Deny. Accept. Retreat from others. Put my game face on. Freak out quietly behind it. Become tense and angry. Creep over to the water’s edge. Dip my toe in. Pull it out. Put it back. Run away, find a hideaway, curl up in a corner and cry.

I curl up and cry, until I remind myself that noticing the pattern is one of my old guides. Until I remind myself to look for the rest of my old guides. Literature, music, an opera house, laughter, my garden, and this blog. These are my guidebooks. These I know from many years experience are what will guide me back in sight of shore. I keep them on the shelves by my bed, in my devices, my bag, and in my head and heart at all times. I go back to them over and over, in good times and bad. With these there is no need to over think, or translate unfamiliar language or concepts, or consult the glossary. I pull them out and put them to work. As I feel myself drown they hold my head above the waves long enough to get swimming again.

Lesson Four – Make Yourself at Home

I will never ‘master’ living with MS, let alone the rest of life. I will never ‘Get it Done’ or perfect my ‘Life Hacks”. Despite the world’s endless enjoinders to ‘be the best you can be’, to constantly improve, to get it right, I am destined to swim badly in stormy weather always and I am (at last) fine with that. No, not just fine. I am embrace it, I celebrate it.

Just as walking is falling then catching yourself (well if you walk normally at any rate, something I no longer do!) my life seems endless round of sinking and bobbing up for air. Of drowning/not drowning. Both have their positives. Sinking brings a sense of suspension in time and space that offers an opportunity to feel and see and think more intensely. Bobbing up brings a sense of rebirth, a chance to see and feel and think anew. I celebrate my poor swimming, it gifts me new ways of thinking about my life. I will never learn to be strong swimmer here, never escape back to dry land, but I am very, very good at drowning/not drowning. I rejoice in that.

Both sinking and bobbing up strip away the noise and complexity and distractions of the everyday and allow us to simplify. When the waters are at their stormiest I make lists of simple things to achieve each day. Tiny lists at first. But they soon grow, I soon grow. I celebrate my tiny achievements – those tiny, inadequate, glimmers of hope. The world’s noisy insistence that I be ambitious, that I achieve, succeed, becomes driftwood. I see them floating in the distance as I drown/not drown. But I have no time to attend to them any more. I am here in these stormy seas to persist as long as I can, to battle up for air as often as I can. Anything else depends on so many other things beyond my control that to be seduced by the sirens of success, or riches, or ego, seems ridiculous. I happily leave that for the dry landers.

These stormy seas define me and my time here on this planet. I have room to splash about, but no more. This is not the dry land I imagined my life living out on, was told it would play out on. I was not prepared for these stormy seas. The jigsaw pieces were thrown in the air that night on the wall. The picture of a landscape became a seascape. I fell in, and I learnt to swim in stormy weather. This may be an age of uncertainty for many of us, but handily enough we humans are incredibly adaptable. We may never get back to dry land, but we’ll make something of these stormy seas. We will make ourselves a home here. It’s what we do.

A Field Guide to Life in Government for User Researchers

Post it note on a window with phrase service design is challenging power

I love giving talks to design students. Partly since I spent several years teaching design and user research and still miss the intense energy of the studio. But mainly because it’s one of the few times I get to step away from my job and just think, often at the behest of a curious student.  Like when one asked me what we did to get people to see the value of design in government…

Notes from the Field

I’ve spent the last couple of years as part of a team of users researchers and service designers working on (mostly) digital public services transformation at the Scottish Government. It’s been challenging, exciting, infuriating, exhausting and deeply enriching. My team work across a huge range of central government and public sector projects – from the new social security service for Scotland to employability services to healthcare. We’re on a mission to help people delivering new services design them from the service user’s point of view, and do that with and not just for those people. Or rather we’re on a mission to help those people learn how to do that in ways that enable them to work across organisational boundaries and collaborate, share and reuse wherever possible.

Now like many of us in ‘specialist roles’ in government I am not a career civil servant, and have no desire to be one. Most governments I am aware of have two kinds of civil servants – specialists and generalists. The UK civil service (in the kind of complex arrangement that governments often need to make, Scottish Government civil servants are part of the UK Civil Service although with some differences in organisational structure and allegiance) was designed originally by and for generalists. It’s still working through how to manage specialists and inevitably that leads to tensions on both sides. But then I know very few user researchers working in places where we are ‘in the woodwork’ or even understood well, so in that respect no change!

I’m a design ethnographer who happens to be lucky enough for now to be practicing her craft in a uniquely rewarding environment. At this stage of my life and career what motivates me is the desire to do what I do in places that need it and where I can add value. After two years I  continue to believe that the practices and values of design are a good match for a civil service adapting to new realities. In my head there is a straight line from the desire to pass power to people and communities Scottish Government is committed to and the world of design. But it would be disingenuous to suggest that joining the civil service is not without its challenges. I spent my whole life avoiding large highly hierarchical  organisations and here I am in the mothership of bureaucratic life.

These two years have convinced me that people like me are needed. However persuading people like me to come in for a while is hard. So here’s a short field guide to a life in government for user researchers. Wherever you are there is a good chance your government needs you. Sometimes it knows that already, sometimes not, and most times even when you get in there it won’t really know what to do with you. But you are needed, for reasons I will come to shortly.

Let’s be honest – we can’t offer big salaries, stock options or relocation packages. We can’t offer travel to exotic places and opportunities to work on cutting edge projects. But the scale of the challenge, the impact of the work? Well there we’re on to a winner. Doing ‘a stint’ in government will give you exposure to some amazing challenges. But it gives something else, a bit more subtle but in my mind even more valuable for a career. It gives you a chance to really learn how to design ‘in context’.

Joining the civil service has given me an opportunity to really explore if, and if so how, design is of value in the everyday doings of government – the delivery of services, the development of policy, the creation of the administrative apparatus of the state. This is government. Lives. Get it wrong and people hurt. This is big and complex and the stakes are high. But these two years have convinced me that what design offers to government is simply this – a straightforward toolkit of ideas and ways of working oriented to the idea that before we solve a problem we should really understand the problem with the people who have the problem. Only then should try to solve it by making solutions iteratively, with the people who have the problem. Finally – all the time we are doing that we remain open to the idea that our exploring and making may reveal a better understanding of the problem that will change our thinking about the solution.

Rambling through the beginnings of an answer to that curious student’s question it struck me that there are parallels between being a design ethnographer and an ‘outsider’ inside government. In both roles the entry to the new situation creates a sense of disorientation and shock. The unfamiliar, the uncertain, the downright weird, abound. We are forced to swiftly try and adjust as best we can.

Entering the Field

As an ethnographer this moment is especially valuable – the physical environment, patterns of behaviour, social systems, material culture, knowledge, beliefs and symbols of the new place are most readily available to us as we encounter them for the first time. We become excited, focussed, desperate to start describing and making sense of what we are experiencing. As the new civil servant, on the other hand, we often feel overwhelmed or sometimes angry ‘why must I do this this way?’. And of course just as the new ethnographer in the field encounters, the ‘outsider’ civil servant will also encounter fear, suspicion, disregard.

The experience of the new exhausts us quickly. Resistance, of course, is futile but also an all too human response to a new situation. We don’t like to let go. As babies we are born with an instinct, a reflex, to grab hold. But none to release. That needs to be taught. Clinging to our beliefs, our routines, in the face of all this newness we begin to consciously try and adjust ourselves to our situation. At this stage though we still feel awkward, still hyper aware of the differences. But we look for the places where we can fit, albeit at first awkwardly, into this land of the Others.

Soon enough we start to find them. Then just as quickly we encounter the challenge of working out if we are bringing something new or simply the old in new clothes. Luckily the ethnographers training is useful here – constantly questioning both the sense of difference and of similarity. It’s that constant questioning, the looking for the why beneath the why beneath the why, that will keep you right at this point. Government has been around an awful lot longer than design thinking or user researchers. As we know from our training don’t be fooled by the illusion of ‘system’ – this is human social life in all its messy and complex glory. Take some time to embrace the messiness.

Adapting to the Field

With time we begin to notice that some of our adjustments are becoming automatic, routine. We no longer need to think quite so much about them and we begin to notice more frequently similarity in the activities and people around us. As we adapt we also begin to move from the changing to the changed ends of the experience spectrum . Where once we had to think about a particular act such joining in with an unfamiliar task or censoring a thought before sharing it publicly now it starts to come more naturally (well, mostly).

Sometimes we notice ourselves adapting, question ourselves about the accommodations we are making.  As an ethnographer we try to stay especially alert to this as we worry about the point at which we might lose sight of our duty to describe and interpret consciously. As an outsider inside we begin to notice the uncomfortableness of being charged or encouraged to bring new ways of thinking in without a clear map of where these are likely to be needed or welcomed.

Despite the moments of discomfort this is a moment that often brings a sense of relief. The energy spent consciously coping with the new now diminishes, at least a little, and is freed up for other things. As a civil servant this energy can be refocussed on the ‘insider’ (emic) view  – we begin to feel closer to those who once seemed exotic, work harder to see past the superficial differences. Adapting can bring moments of insight as we see opportunities to learn as well as change, or begin to question our values and beliefs, no longer so sure of ourselves. We also begin to notice that many of those ‘career civil servants’ are in fact outsiders inside as well, they’ve just been inside longer. 

And we begin to fall in love. I know, we don’t talk of love and work in the same breath usually, but ethnographers know that falling in love with our fields is just one of those things that can happen. This is also the time to really ask ourselves, in the words of David Byrne, ‘what am I doing here?’. Can we see where we can add value clearly, are the conditions right for us to be able to deliver it? Do we need to understand more, or adapt or practices more, or build our alliances more?

Going ‘Native’

Acceptance. The moment when we fully lose sight of what was once so obviously new to us. An ethnographer worries about this – the interpretavist stance dropped as being part of the action melds into simply being part of. Belonging is the state of deep acceptance of and comfort with the community and context you are in. As an ethnographer we shy away from this, keen to keep that clear line between me, and me in the field. But as a civil servant, should we perhaps not seek the moment of acceptance? After all, this is a community with a very clear, consistent and strong sense of identity and culture, so much so that outsider or not we all sign up to the Civil Service Code.

Well the answer to that I am afraid time only can tell – I am not there yet. I’m conscious I’m teetering on the edge of going ‘native’, but not sure what I’ll do when that happens. But what I do know is that these last two years have provided me with a  depth of professional experience and growth I struggle to imagine finding elsewhere.

When the Field Calls

Joining government convinced a) it’s broken and b) you have the fix is a recipe for disaster. Joining government with a desire to understand, and then help, well that’s more likely to leave both insiders and outsiders with a good feeling. I’d encourage any of you who ‘hear the call’ to think about accepting, but only if you are ready to go in to government with the same open and learning stance as you would any field.

The salary won’t be great, the travel won’t be glamorous, the frustrations will be numerous and you may never feel that what you are doing is deeply valued by the organisation itself. But you will learn more in government about your practice than you could ever imagine. You will learn more about complex messy human systems than you could ever imagine. You will remind yourself that lazy stereotypes about civil servants are just that, lazy stereotypes.

Ultimately, the best reason to do ‘a stint’ in government is the same as the best reason to do anything on this beautiful planet – to grow.

Life in the Meanwhile

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I encountered a beautiful idea recently – the meanwhile place. It’s the idea of using temporary spaces for all sorts of things while they are waiting to be redeveloped, or sold, or for the local council to decide what to do with them. There’s even a foundation devoted to promoting the idea – The Meanwhile Foundation. It wasn’t just that the idea of making use of unused spaces while they are in limbo felt eminently sensible, but there was something instantly appealing about the idea of letting go of the need to have permanence, certainty, ownership. That a group of people might take on a space, do something with it, in the meanwhile feels almost spiritual. To let go of the idea of permanence like that is something I aspire to in my own life. That idea of the meanwhile seems to me a much more powerful way of thinking about ‘the now’, holding us as it does not in some impossible to achieve life without future (or past) but rather in balance with it. It allows for the future to be part of the now without dominating it.

Like many of us I’ve been taken with the idea that to live in the now is a good thing. Yet for all my efforts I fail more often than not. The now is very hard place to be, the future casts a long shadow. Staying in the now requires such effort, and feels so odd and artificial. Truth be told it’s a place I visit rather than truly inhabit. There are good reasons for that of course.  Growing up we are constantly asked to consider our future. But that future is a very specific kind of future. It’s where we imagine ourselves to be something, to achieve something. Thinking of it we learn to worry that we might not make it to ‘being something’ and in that worry is born a number of the things that will haunt us the rest of our lives – a sense of inadequacy, the need to strive, the confusion of self with status or place in the world. Our neuroticism is born in that compulsion to live in the future. Even when life casts the future into the seas of ‘not knowing’ (as MS did me) its Siren call not only persists, but increases. Now we have so many futures to fret about – the one in the wheelchair, the one with the breathing apparatus, the one cut short. The now becomes more and more elusive.

But the meanwhile, the meanwhile feels so much more comfortable. I am here in the meanwhile, as we all are. While I am here I might as well… I might as well try this, I might as well try that. Freed from the effort of resisting the Siren calls of Past and Future that the idea of the Now imposes, life becomes lighter, freer. After all isn’t now really just the time in limbo between past and future? Isn’t life just a series of flashes of impermanence? Aren’t we really just like children grasping at dandelion seeds or bubbles? Kids don’t worry about the bubbles they missed – they laugh and embrace the fleetingness of it all. It doesn’t matter that we miss so many in the meanwhile, because we catch some and there will be more. In the meanwhile we can enjoy what have managed to grasp without mourning what was, or worrying about what will be, missed. In the meanwhile the Sirens are heard, but need not obeyed.

Life in the meanwhile… Now that seems achievable.

The Service Lift

She dances on the edge, the lost me. The unreconciled me. Fearless. As I was once. She lives behind the curtain, in life’s backstages, waiting for me…

The service lift. The place where illusions are swiftly dispatched. Out front the hotel is buzzing with guests suspended momentarily in the uniformity of ‘global upscale hotel chain’ style. Daily lives put aside as the fantasy world encourages entertainment of fantasy lives. Like lingering in an airport and imagining all the more glamorous locations we might be going to, hotels encourage us to imagine versions of ourselves more exciting and interesting than the one we carry through most days. But illusions recede with brutish speed as my guide and I wind our way past artifice to artless utility, my guide embarrassed and a little annoyed, unsure of the rules of service when inaccessible spaces force a guest backstage.

It started hopefully. Arriving for an event the thought that there will be no straightforward access route for someone with a disability is just a tiny worry scratching at my carefully constructed illusion of normality. But a few moments of heart sinking search, and the look in the receptionist’s eye as I approach hopefully asking where the lift to conference room X is, shatters all illusions of normality. I know immediately where this will end.

We enter corridors designed not to soothe occupants into a vague sense of being valued (as they truly are, as long as they can pay) but into efficient action. Designed not for lingering but for speed. Staff rushing behind the scenes to ensure the apparently effortless ‘service’ can be provided out front look a little askance as they realise ‘a guest’ is amongst them. Decor stripped of all but the most functional features. A shabby, unloved, space reminding the staff who must use it of who’s who and what’s what. My guide apologises profusely, but there is no sincerity behind the words. Rather there’s a thinly veiled implication that it is me that has created this awkward situation.

Unless you have worked in a hotel, it’s a unknown world to those caught in the chimera of stylish calm out front that most ‘upscale’ hotels strive to create. A guest’s wallet and online hotel review being soothed into compliance by the pampering. Sometimes I make myself better by musing that it’s not just the disabled but VIPs who experience this. Whereas out front I might entertain a little fantasy of being some glamorous globetrotting writer as I linger in reception, on these journeys backstage I sometimes fantasise that I’m a President being hurried along these corridors by my security detail. It helps pass the time till we meet, she and I, in the service lift.

The service lift. Those grotty, often smelly, transports designed for dirty laundry and dishes and and into which the disabled must be herded when access has been forgotten. Inside she gets straight to work. “Forgotten, unconsidered, worthless. Yes that’s it, worthless. Other. Not part of. This is what you deserve, you cripple.” She has not acquired the veneer of civilisation, the politically correct filter, the lost me. She knows where the vulnerable points are and wastes no time going for them. “You don’t belong out there, you belong here with the grime and the smells and the bleak ugliness of it.”

Like so much ‘designed’ for the disabled this access route is stripped of any aesthetic sensibility. Why go to that effort for the worthless? Surely they are grateful for any accommodation, no matter how mean? “Look how kind they are allowing you to come back here. Guiding you. Be grateful, you shouldn’t even be here.” she taunts, revelling in the chance to let rip again with all the disgust and rage she can muster.

By the time I am disgorged into another maze of backstage corridors my sense of a professional, worthwhile, self has been shattered. When we finally reach my destination I look immediately for the toilet. Experience has taught me that I need a few moments alone to compose myself, to recover enough sense of self to re-enter the world of “I’m okay really.” But there’s salt yet for these psychic wounds. There is no toilet on this level, I must either clamber up and back down the dreaded stairs, or reenter the lift.  I decide to spare myself that till biology needs it. I’ve had enough experience now to know that I’ll be able to swallow down this taste, hold the sting of tears in my eyes at bay, recover ‘myself’ enough to get through the event.

Being denied access as a disabled person –  to spaces, to jobs, to experiences, to participation, to pleasure, to beauty, to fun – is not just about equality of opportunity. Lack of access denies self-determination, destroys confidence, comfort and a sense of belonging. It upends all the hard work that disabled people must do if they are to keep engaging with a world that, despite the advances that may have been made (depending on where you live),  still routinely forgets us. The inaccessible meeting venue, the bus driver that can’t be bothered to wait till we sit, the buffet lunch, the standing or walking meeting, the inaccessible website, the open plan office. A world of situations designed for the many that could so easily be made better for all by considering the few. But aren’t.

Why?

‘I never think of you as disabled…’ – Working with MS

Two of my colleagues at Scottish Govt, Fiona Munro and Andrew Slorance,  have been sharing their experiences of cancer online. Their stories are astonishing, challenging and moving. For anyone going through a similar experience, or providing care (paid or unpaid) to someone in their positions, their blogs are a treasure trove of insight into what it is to live with cancer. I have followed both their stories with a feeling of awe at their courage and sympathy for their respective journeys.

Living with cancer is of course a very different experience from that of living with multiple sclerosis (MS). I often find their blogs to be accounts of experiences that are very remote from my own health challenges, and muse on how lucky I am to have a condition that is more insidious than invasive, more volatile than violent, more grindingly dull than shocking. But they both recently blogged about the challenge of ‘looking well’ and I suddenly found myself relating deeply to their thoughts and experiences. And reminded of conversations other things I have written on this blog has prompted with others who live with chronic progressive diseases.

Like most people diagnosed with MS it was a few years before my disease produced permanent and then steadily worsening disability. In those early days few would have known from casual encounter that there was anything ‘wrong’ with me. These days crutches and a left leg that drags are the primary visible signs. Pretty much everything else is invisible, at least unless you know me well and can spot the signs.

Both Fi and Andrew talk about the misconception that ‘looking good’ can promote, especially as they use social media to share their experiences good and bad. As they both note, behind the looking good moment is an invisible tale of all that went in to getting to that point, and the price that is paid afterwards. For those of us who have lived for years with a chronic condition the anxiety about public perception is an all too familiar quandary. I remember talking to a work colleague, trying to explain that my leaving a workshop early had been because I was having a flare up and controlling my ‘cognitive fog’ and spasms and pain was exhausting me. Their comment has stayed with me – ‘I never think of you as disabled’.

‘I never think of you as disabled’ – there is so much to say about that. Starting with – neither do I! I refer to myself as such when I feel it’s important but I don’t believe myself to be disabled. In my head, my dreams, I am not. I lived 30 years without MS, my identity was formed long before MS took me. For a long time I moved between periods of feeling very definitely ill and ok, to ill and disabled then not ill but a bit disabled, to more or less ill and disabled all the time. And it will change again, though like everyone with MS I have no idea when or how, I just wait for that to play out and try to keep that part of the game at bay as long as possible. I work hard at not looking disabled, yet am surprised when people say they don’t think of me as such. Such are the contradictions of a life with MS.

The ‘ill and disabled’ mean I now spend as much time working out how to be those and a worker, a partner, a baker, a gardener, a mother, a friend, as I do anything else. Radical self-management is the name of the game. Life is a constant series of compromises and medications and adjustments and disappointments to self or others. I can have the energy for x or y but not both. I can do a but that will mean a day in bed after to recover. Everything is so finely tuned that a small unanticipated change can upend my day. I get a bus from work to the train station because the walk from work to bus and bus to station is short and I can manage it most days if I have paced myself. On the other days I get a taxi or on occasion get to the train station stop and walk instead into the hotel near by to crash the night as I just can’t make it the hour and half it takes to get home. But the other day the bus was diverted and I ended up what for most would be a 5 minute walk away from the stop I should have been at. It was the end of the day. It was hot (we MSers don’t get on with heat), it was the Edinburgh Festival and the streets were packed and noisy and my brain started to get overwhelmed by all the stimuli. It took me nearly 25 minutes to get there, including several points where I just wanted to lie down and cry in the middle of the street (being festival time I’d probably have got away with it, maybe even earned some money as a busker…).

People sometimes talk about the fatigue that is both a part of and a by-product of MS as like an egg timer, you have so much energy for the day and then it’s gone. I tend to think of it more like a smart phone battery. You have to think about what apps you will be using when and whether you will have enough to get through the day. If it’s tight you think about how to save some power here and there (switch off Bluetooth, dim the screen) or when you might be able to recharge. And every now and again some app drains your battery unexpectedly and you are stuck in the middle of the street without a smartphone when you need it (yes I’m looking at you Pokemon Go!).

I am incredibly lucky – the kind of work I do and a very supportive employer (Scottish Government Digital) and boss (thanks Colin Cook) means I can plan a lot of my day myself. I can build in small gaps here and there to recharge. Lots of short walks are ok as long as there are a few minutes between, similarly very intense discussions are ok if there is a little quiet time after. I can work at home when I can and though I have a long commute I can afford to pay to go 1st class so I can be guaranteed a seat, a bit more space for spastic legs, and quiet to work so I make best use of the time, saving other time for rest and recuperation. I’m pretty bloody good at all this and it helps that most people I work with regularly know I have MS and will walk at my pace, insist we take the lift, or remind me to look after myself if I’ve been a bit visibly worse. And yet…. I don’t want to be thought of as disabled. I am conflicted about how people see me as a colleague in the same way as I feel conflicted about using two crutches (the sensible energy protecting and safe thing to do) versus one, and even more conflicted on the days when I hear the wheelchair calling. I know I could do so many things both with my family and at work I currently can’t because the effort of walking with crutches makes it impossible. But wheelchairs are for paralysed people aren’t they? What would people think if I was in a wheelchair and then stood up and walked with crutches…? What would I think, sitting there? Such are the complex emotions of life with MS.  

All that has taught me to be gentle on myself. Yes I could play a much more active role in family days out, ironically, if I would use a chair or a scooter. But I am not ready for that and that’s ok, I don’t have to be perfect, getting through the day is tough enough. Besides, having a mum who can’t cook dinner often is pretty good when other mum is away and you are a teenage boy who loves takeout. And it’s taught me to be grateful that I am able to flex my job around my condition somewhat as that keeps me at work, and being at work helps me maintain some sort of sense of myself as a person not a disability, or an illness. It’s taught be accepting that even with all my experience, self-management strategies, and luck, I will still regularly feel caught between wanting the world to know and accommodate my disability and wanting this all to just be a dream I will wake up from and once again be able to go about my day without thinking about whether I’ll run out of power at an inopportune moment. But increasingly it’s also made me angry. I know I am lucky that self-image is my biggest worry at work – for so many disabled or ill people work is either impossible or impossibly difficult because they don’t have the kind of supportive workplace, boss and teammates I do. Which is a tragedy for them and a stupid and costly waste for society.

I don’t imagine I’ll ever get the balance between wanting to look well and wanting the world to accommodate my needs right. Not least because MS is the disease that keeps on giving. But I hope that as a society we can get our heads round enabling everyone with an illness or disability who wants to be able to stay in work to do so. After all, how many of us will never be in the position Fi, Andrew or me are in? As retirement ages rise and more and more people survive things like cancer huge numbers of us will end up having to manage illness (and its aftermath) and disability while working. Which means huge numbers of employers will have to figure out how to help them. Creating workplaces and processes that don’t care if you are disabled or not will become as important as figuring out how to build digital services that accommodate everyone’s needs. Now that’s a future I don’t mind thinking about!

Living presently: the best laid plans are not the point.

But Mousie, thou art no thy-lane,
In proving foresight may be vain:
The best laid schemes o’ Mice an’ Men
Gang aft agley,
An’ lea’e us nought but grief an’ pain,
For promis’d joy!

Still, thou art blest, compar’d wi’ me!
The present only toucheth thee:
But Och! I backward cast my e’e,
On prospects drear!
An’ forward tho’ I canna see,
I guess an’ fear!

– Robert Burns, To a Mouse

It’s not the kind of thing most of us want to hear – that our illnesses bring gifts with their trials and tribulations. But it’s none the less true for all that. A much looked forward to week off, full of plans, is upended, my best laid schemes did indeed gang agley.

In retrospect I could have anticipated this; July and August have a long history of challenge for me, and a holiday is always a trigger. What has been ignored or saved up suddenly finding its release valve. It’s when I first noticed the early symptoms of MS. When the optic neuritis that would herald the start of this phase of life was diagnosed and when most of my biggest relapses have flared. So instead of schemes unfolding I have been in bed once again, an infection causing symptoms to flare and overwhelming fatigue to kick in. Truth be told I’d noticed it creeping in a few days earlier but playing at the edge of the cliff is a hobby I have had since childhood.

At this cliff edge though I struggle – knowing I should rearrange plans, unable to take the decision to do so, hoping that in wilful ignorance I might find bliss. Dancing with fate increasingly furiously, I hope that I can stay on the right side of the edge. But as I start to slip over I know it’s time to concentrate on landing well. In the past I’d have danced all the way down but I’m much better at this now. When it becomes irrefutable that I’ve flared again I quickly accept it’s time to stop. Attend to what it is wrong now. Banish worries about what has changed or what this might mean about the future. Concentrate on the present.

You see the real point of To a Mouse is not its best known soundbite, that plans often go wrong, but that the mouse copes with these so much better than Burns precisely because it has no sense of past or future. It lives only in the present. It’s not the schemes going awry that cause us pain and grief – it’s the thought of what might have been, the pain of remembering what has been lost, and the fear of what might yet happen.

Multiple Sclerosis – the disease of many scars on the brain – might also be the disease of existential angst. It traps us, if we let it, between all that we have lost and all that we might still lose. It keeps us permanently teetering on the edge of the cliff. Like a cat playing with a mouse it taunts us with the prospect of relapses and losses that may or may not hit at any time. There can be no future plans without accepting that they may well gang aft agley. No coping without accepting that life in the present is what matters when MS dances you over the edge. Listening to the body, to the mood, to feelings. Accepting the stillness and quietness of these times. Will it be hours, days, weeks before the fatigue lifts, the muscles begin to work more normally again? That doesn’t matter. Thinking about that will not help, twenty plus years with MS has taught me that.

What has been has been, what will be will be. What is, is what must be dealt with. The recovery plan is put into action: call off engagements, warn the family, make sure pills and books and crosswords are by the bed. Fire up the radio. Most importantly – the baby steps journal is brought out. Experience has taught me how important it is to focus on recognising and revelling in the small triumphs – ‘got up and showered’, ‘spent time in the garden’, ‘brushed teeth’ in the early stages moving on to ‘got dressed’, ‘played with the dog’, ‘wrote a letter’ as things improve. Over  the years those patterns have proved the only certainty in the land of radical uncertainty that is MS. Each day will have some small triumph, and as the entries increase the return to something more ‘normal’ emerges. This time the cliff was not too high: the dance lasted days and not weeks or months, the landing was soft and my baby steps journal is daily full already of the small present moments that are the real stuff of life. This has been a good fall, a smooth recovery.

Over the years MS has taught me that whilst past and future consume so much of our energies, so dominate our thinking, it’s in the present that life is found. In the daily round of moving, talking, watching, listening, tasting, smelling, feeling. From those moment by moment building blocks life is built – interactions made, plans enacted, feelings founded, thoughts explored. Life is made in the absorbing of what the world puts in our midst, not in the regretting of what it doesn’t or the anticipation of what it might.  When I am at the bottom of the cliff the way back up will be so much harder if I spend time on those enemies of living presently.

But of course, like Burns, I can’t escape the siren call of past and future thinking for ever. Already they are creeping back in. But my baby steps journal is there as a constant reminder that the solution to plans going awry lies in radical attention to the now, something MS (amongst others things) has helped me become much better at. After all, lessons in living presently are an appropriate gift from something that steals one’s past and future. That plans will go awry is just a given, no matter who you are. But when they do, Burns’ mouse has much to teach us about how to cope.

 

 

Only Prepare. Only Connect.

DSCF1781Like most of us the horrors of Baghdad and Nice and Turkey have left me feeling unsettled, unnerved. We settle between each incident back into something that feels within our control, something that feels familiar. And then the ground is yanked from under us again. It’s been an unsettling few weeks for other reasons too – two falls reminding me of my limitations, yet another cancer diagnosis in the family, and then one day I woke up to discover that my most recently moved in  neighbour was erecting a 6 foot tall fence between us where before had been a low wall between our small gardens. We are now fully blocked off from each other. A small inconvenience in the scheme of things, especially against the back drop of the nightly horrors on the news, and yet I have been feeling unusually upset by it.

When we first saw this house nearly 10 years ago (I was shocked to realise when thinking back to that first sighting) what we loved more than anything was our funny little open back gardens. We have always lived in flats or shared houses with a friendly, neighbourly, community feel. When we found this terraced row with its back lane serving all the houses and the lovely but narrow little gardens, it felt like we had the perfect combination of privacy and community. I look forward all winter to the spring when we all appear in our gardens again and the sense of daily familiarity and quiet companionability, light but definitely there, re-appears. It’s part of the rhythm of the year – as Wordsworth wrote we are “Roll’d round in earth’s diurnal course; with rocks and stones and trees”. When I have been ill that garden has been my recovery place; a special, precious space for me. I could sit out there and watch the neighbours coming and going, gaze across at the others’ gardens and enjoy them, and generally feel safe as life went on around me.

I grew up in hotels – their own kind of community. Then I lived in shared flats and houses and then in a series of tenement flats. As a young woman I lived for a short time alone (the only time I have lived alone) in the colonies in Edinburgh – rows of workers cottages not unlike the place I know live, though smaller. My name had landed me a lower colony flat when a woman from Uist heard me as I sat in a rental agency trying to find a room as I was about to be homeless. She walked over and told me I could have her place for the rent I would have paid for a room anywhere else. I was struggling for money in those days, often with not quite enough to eat. The elderly couple next door would give me a plate of food on Sunday night in return for me tidying their garden and putting out the bins. The artists across the street would feed me on a Wednesday night in return for sitting for them. I didn’t like living alone but I loved that street.

I remember when our second son was born. My partner went into labour very quickly at home in the tiny little Leith tenement flat we had just bought. I realised that the ambulance wouldn’t get there so I ran out into the stair shouting for help and then ran back. Within seconds my upstairs neighbour was there, calling for help and guiding the ambulance crew up the stairs as I sat in shock having just delivered our baby. A couple of hours later, sitting around in the flat with other neighbours popping in and out, bringing food and curiosity, I heard our lovely old lady downstairs – notorious as the source of all local news – bawling down the street to a friend that the baby had been born and all was fine.

More recently here we paired up with our neighbours on the other side to remodel our two gardens together, digging out tonnes of rocks and soil by hand, us four adults and two kids, creating decks with raised gardens above, building fences (small enough to stand over chatting). We still chat over our fence, but when I turn in the other direction now I see only a wall. Of course as I contemplate my new reality as ever there is a silver lining. Now I know what I loved about this house, because it has gone. I had no walls.

For me at least, this world is tough and lonely enough as it is without walls between us. I have always loved coming back here to my friendly little community without walls. But till this point I had not really understood that fact, or that this was how I have almost always lived.  As I contemplate my reaction to this new wall in my life I realise suddenly that it is just trying to tell me something. I know now what I want to find – a place full of people who want fewer and not more walls between them.  A place where people agree upfront, commit happily, work hard, to keep the walls down, to make community. And it asks me to contemplate the other ways that I put up walls and commit myself to start tearing those down. We don’t need walls, we need each other. We are each others’ walls. I can’t hide from the bad stuff. I can’t build a wall to keep the bad stuff away. I can’t run away from the bad stuff. When it’s my time, it will find me no matter what I do. There are no walls that can keep it from me. I can only be ready for it. I can only prepare. I can only connect.

 

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