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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.

 

Sometimes we forget

 

For someone used to involving herself in political debate I am a little surprised to learn how much I have come to value the enforced public silence of the Civil Service Code: watching, reading and listening to others but not contributing. In the silence I have had time to think deeply about my feelings, my hopes, my fears without the noise of the public fray. I have been able to reflect and root my thoughts beyond the ‘us and them’. Political decisions aside, today I feel a sense of deep sadness that the world of hope through unity I grew up into, surrounded by people who had survived WWII, and even some who had survived WW1, has been so challenged in these last weeks.

I grew up with the idea of Europe as a shining special place that was home to a beautiful idea – that by seeking common cause we could be not just stronger but better, kinder, together. I was 9 when the UK joined the EC. I have known little else. I have spent my whole adult life travelling widely across Europe. I have worked with, taught, and loved people from all over Europe. And I have always regarded myself as a European as much as a Scot.

I know that the vote doesn’t change that, but I woke up today desperate to go to Munich – my German partner and I live between here and there and our future together is now as for so many thrown into doubt. My Facebook feed is full of the sadness and shock of former students and colleagues around the world, and especially of young people who seem stunned and even afraid. We have much to do to pull together in the spirit of that beautiful idea. To reassure our friends, our young people, ourselves, that no matter how you voted, the beautiful idea of common cause in unity against hatred and intolerance is bigger than all of this and can survive regardless.

Whatever the months and years ahead bring I hope very much that the forces of fear and mistrust that sadly played too visible a role in the debates can be addressed. There is much that can be improved in the democratic structures of the EU (as here), and Europe (as here) is struggling with those forces of hatred and intolerance. Regardless of how you feel, the idea of a Europe seeking common cause somehow, someway, is still a beautiful one and I choose to hold on to the belief that out of all of this sadness something stronger and better and even kinder can emerge.

Today also feels like a day to reach out and reassure. To all my European friends here in Scotland, well our First Minister said it for me – you are welcome here. To all the immigrants to this country feeling unsettled or even scared I hope the days ahead will allay those fears.  And to all those whose suffering in WWII gave birth to the idea of the EU, I’m sorry. Sometimes we forget.

 

 

Our places deep with song

Because my mouth

Is wide with laughter

And my throat

Is deep with song,

You do not think

I suffer after

I have held my pain

So long?

 

Because my mouth

Is wide with laughter,

You do not hear

My inner cry?

Because my feet

Are gay with dancing,

You do not know

I die?

– Minstrel Man by Langston Hughes

I was terrified. I’d heard of this place somehow (before the internet was around you always heard about things ‘somehow’). You couldn’t hear the music from the street, only when you pushed at the discrete entrance and started to head up the stairs, so it had taken me a while to feel sure I was at the right place.  Like me until a few days before, late night revellers on Princes Street in Edinburgh in the 80s were  unaware of the transgressions just a few feet above. And though 80s Saturday night on Princes Street wasn’t quite the all night bacchanalia it is today, it was busy enough that I had walked past the entrance several times before I felt safe enough, invisible enough, to dart in.

The sounds from above felt familiar. It was music that had permeated my childhood, so recently fled. ‘D.I.S.C.O.’  was snaking down the stairs and swirling around me, tugging my still frightened legs up towards the sound of bodies pulsing on the dance floor. It was the music I had rejected in my scramble to acquire an identity that shook off my family, my pre-destined path. But this didn’t feel like the upbeat, mindless kind of stuff I had screwed my face up in distaste at when it appeared on Top of the Pops. This music felt hotter, sweatier, more dangerous somehow.

I pushed into the club past leather men dancing eyed by baby dykes in biker jackets, past old school butches courting femmes, past drag queens with wigs and heels lifting them high up above us all like camp angels, and past men and women who looked like they had popped in to sell insurance. Everywhere I looked my eyes my eyes felt rigid with shock at what I saw. Shock not at the difference on display, but the familiarity. Everywhere I looked I saw people living what I felt. People claiming these moments of self realisation not hidden away in some dark corner of their soul, but under the lights on the dance floor. Sure around the edges was a darker space, but this space was not for fearful hiding but for fearless flirting.

Track after track of what I had until then (with the level of sneering contempt only a teenager rejecting ‘the oldies’ can muster) dismissed as cheap music for the masses pulsed through my body, teaching my heart a new and unfamiliar rhythm. The rhythm of family found, not family fated to. The rhythm of familiarity, of seeing out there what I had held inside for so long. Not sanitising and stripping away what made us different – our sexuality – but celebrating it, revelling in it, expressing it. But there was something else. For all the joy, the thirst quenching relief, at being amongst family there was a much darker, more powerful undertone. These were fleeting moments, and we all knew that too soon we’d be back on that street, eyes flicking around for signs of danger, nerves tingling in readiness for fight or flight.

For many of us the events at The Pulse in Orlando seem to have stirred intensely fond and grateful memories of clubs like that. Of how important those havens of comfort (if not cleanliness, the floor of Fire Island sucked you in with years of ineffectually ‘cleaned’ grime) were. Memories of those places where you first saw yourself reflected in those around you, where you could flirt without the fear of attack or signs of disgust that accompanied any such attempt in the ‘straight world’. Where you could hold your lovers hand, kiss, dance, without a second thought for your safety. Or so we thought. So those men and women in the Pulse thought…

It was then, and is still, a ‘straight world’. For all our advances, for all our new found ‘rights’, this is still not my world. I still cannot walk down the street without also scanning for the signs of aggression imminent that all LGBTI people can be subject too at the drop of a hat. As a young woman I used to rage at the stupid, futile, ridiculousness of a straight world that could not simply grow and accept “we’re here, we’re queer, get over it” (as we would chant on that same Princes Street during our many demonstrations). Could not quite accept that I would live my whole life unable to do what every straight person can without a thought – hold my lover’s hand in the street without comment or fear. Yet here I am 30 years later, a lifetime later. And it has not changed. I am still different. The anger still bites at my throat, rage still grips my soul as I contemplate a world so incapable of getting over it. Our difference is still reason enough for many to feel a flicker of discomfort and for some to feel the flame of hatred. Reason enough to gun us down in our dark, safe, life affirming, self realising havens of cheap music and precious freedom.

Orlando has reminded us all that for as long as we cannot hold our lover’s hand in the street safely, places like the Pulse should be celebrated and protected. From Stonewall to the Admiral Duncan to the Pulse they have tried to take them from us – these places where our feet are gay with dancing and our mouths are wide with laughter. They can take our safety, our equality, in the streets and the workplaces and the hospitals and schools. But we will not let them take our places deep with song.

Because Orlando.

Shock, then sadness, now anger…

Why does LGBTI equality matter? Orlando. 
I’ve been afraid for my safety, my life, my career, and more recently for all that again for my kids, for as long as I can remember. I’ve been fighting for it for as long as I can remember. I am still not equal. I am angry, and tired, and angry I’m tired and tired of being angry. 

Equality matters because without it bigots feel authorized to walk into a gay club and gun people down. Equality matters because without it people feel authorized to throw gay men off buildings, ‘correctively’ rape lesbians, forcibly sex change gay men, and throw transgender women into male prisons to be brutalised. 

Equality matters because there are people right now here in ‘Europe’s most LGBTI positive country’ who feel afraid to be out, who are harassed and discriminated against. Equality matters because if not here then where? Equality matters because if not us then who? Equality matters because for all our advances in Scotland too many of us still experience prejudice or feel afraid to be out at work

Equality matters because we are not equal. Not yet, not always, not all of us, not everywhere. Equality matters because laws and rights don’t guarantee it. Equality matters because Orlando.  

It’s not over till it’s over for all of us, always, everywhere, all the time. Love is not love. Not yet. But let’s try here. Let’s make it here. Let’s make Scotland the place where love is love at last. Let’s make Scotland the place where equality matters. 

The Happiness of Work

I thought of happiness, how it is woven
Out of the silence in the empty house each day
And how it is not sudden and it is not given
But is creation itself like the growth of a tree.
No one has seen it happen, but inside the bark
Another circle is growing in the expanding ring.
No one has heard the root go deeper in the dark,
But the tree is lifted by this inward work
And its plumes shine, and its leaves are glittering.
[…]
For what is happiness but growth in peace,
The timeless sense of time when furniture
Has stood a life’s span in a single place,
And as the air moves, so the old dreams stir
The shining leaves of present happiness?
No one has heard thought or listened to a mind,
But where people have lived in inwardness
The air is charged with blessing and does bless;
Windows look out on mountains and the walls are kind.
– May Sarton, The Work of Happiness

One in fifty. I used to think of myself as a ‘one in twenty’. As a kid it was the oft quoted figure for the percentage of people reckoned to be gay. Such things seem a little less useful in the era of fluid sexuality. But the one in fifty is more up to date. One in fifty people diagnosed with multiple sclerosis will still be working 25-30 years after diagnosis according to research by the MS Register. In a few years, with luck, I’ll be one in a hundred. The figures are so stark they stopped me in my tracks.

I know of course that I am lucky in more ways than one. My disease course has been kind to me where it has been vicious to many others. My work and employers positively minded to make managing MS and work more feasible than it is for too many. For most of my working life with MS I have had work that asks more of my mind than my body, employment that has offered the flexibility to work with and around the highs and lows of MS, employers who have had positive views on disability and illness.

One. In fifty. 

When I was diagnosed I was much more concerned with the odds of me still being alive at this stage than I was with the odds of me still working. But as shock and fear and uncertainty settled over the years into the tedious slog of life with a chronic and progressive illness, anxiety about work loomed ever larger. To manage fatigue, spasticity, brain fog, foot drop, pain and all the other nips at the heels of comfort and ease and ability is a full- time job. Many times the challenge of that and a job in the more conventional sense has seemed impossible and I’ve teetered on the edge, slipped a little over it too. But somewhere deep inside I have known that the inward work of work itself is (truly) vital, is part of what lifts me up.

It’s not in the silence of the empty house but in the clatter of the working day that happiness grows inside me. For those hours the emptiness of multiple sclerosis, the void it pulls you toward, is drowned out. I have purpose, distraction, the comforts of collective endeavour. At a basic level, as I have often found in my worst moments, I have the simple power of ‘a reason to get out of bed’. A reason to unfold and stretch out a body full of the spasticity and pain that has settled over it through the night. To take the small awkward steps that through the day (at least till energies and medications wear off) will build in confidence and speed.

In the rhythms and energies, triumphs and disasters, joys and frustrations, of work a peace grows. I have learnt to aggressively manage my energy and time. I work four days so that on the fifth I can rest and sleep, and on the sixth and seventh gently recharge. One might think that it is in the quiet of home, body freed from the demands its failing abilities struggle to meet, that I would be happiest. But in those times the ghosts gather – remembrances of a future lost, sad sighs for roads denied. There is no peace in those times. I need work. Not always paid employment. But work.

It’s the world of work and purpose and others that gifts a sense of time spent well, of life lived well, of limitations stretched out as far as they can go. Having finally found myself able to balance all this, manage all this, in a place that is stimulating and challenging, I am happier than that terrified woman standing in the rain the day she was diagnosed could ever have imagined.

I dread the loss of this. I never look ahead for fear of that. I weep for those for whom employers and work will not flex and accommodate. Those other forty-nine, were their conditions really so bad that work was impossible? We can turn to statistics on disability to progression to see that could not  be the case for all, perhaps even many of them. Is it so beyond our wit to redesign work and workplaces to make the happiness of work available to all that seek it, need it?

I am lucky. I know that. I wish this luck could be gifted to any of that forty nine who like me desire and need the happiness of work. So to my list of jobs to be done while I am still on the right side of that ratio I’m adding ‘be part of making change happen for people with MS in the workplace‘.

 
Multiple sclerosis steals our future. We deserve the shining leaves of present happiness. We deserve the happiness of work.

Ann Hallenberg: A Precious Gift


The first time I remember noticing it was when I was a toddler. I had a picture book I loved to read. I would lie on the floor in the side room of the hotel my parents managed, head propped up on my arms, staring and staring at the pictures. I can remember everything about those times. How I would cycle between complete absorption in the pictures, feeling so in the scenes that I could feel, hear, smell everything in them, and then a sudden awareness of everything about me. How it felt to be stretched out, my feet swinging behind me. The carpet pressing on bare legs where they touched it. The sounds and smells of the hotel as its routines unfolded – lunch, afternoon tea, cleaning, guests checking in, guests checking out.

It didn’t feel like two worlds – one real, one imaginary. I don’t remember thinking that they were different. Just part of the same thing, the same experience of quiet absorption in the experience of life being lived. ‘Virtual’ and ‘real’ sensations tumbled about in my head. I could ‘feel’ the resistance of the hard typewriter keys with the little ridge of metal all around them as I listened to my mother typing in the office, could smell the pies fresh from the oven in the bakery of my book. My legs would tense a little in sympathy with the sound of a waitress walking by with a silver tray heavy with plates. Being in the world was a fluid thing, no need to fix, to formalise, to explain.

Sometimes (well, often really) at school I would get into trouble for not paying attention. I longed to be able to tell the teacher that I was paying attention, just not in the way she meant. I would try hard to concentrate on her voice but my mind would get lost in contemplation of the sounds of the heating pipes, or the feel of my fingers sliding along the grooves on the desk left by generations of others pupils. I would be writing when suddenly the tiny vibrations in my fingers created by the scraping of pen nib on paper would take me off into a world where things didn’t need to make sense in some intellectual way but could just be melded into you until the difference between ‘you’ and them was no longer important. I look back now and see school as the start of the binary time – when you were told that real life was the life of consciousnesses of self, of paying attention and making sense in ways that were prescribed and structured. Of leaving behind full absorption in the world, which we were taught had a (pejorative) name: day dreaming.

I often wondered if this was what everyone felt like, how everyone experienced life, or if others found this binary living, the solid world, easier than I did. It’s something I have carried with me through adult life. As a deeply shy teenager struggling to work out how to be in the world I struggled to let go of that need to ‘be’ like that (as the world wanted me to let go, I learned at school). As a more confident adult I can pretended now more easily that paying attention to the surface of things, the bits that lend themselves to rational explanation, to analysis, is what really matters. And then I go to a concert and all pretence is abandoned.

I have no intellectual engagement with music – much as a try to learn about, be interested in it, at that level. I can be curious about its mechanics, its logic, now and again. But as soon as I sit down in the audience the need to think is overwhelmed by the need to feel, to experience. I sat down a few days ago in the Wigmore Hall to hear Ann Hallenberg sing with the Classical Opera Company. As she walked out on stage I instantly felt myself let go of formal thought, I was here for this. For a singer so skilled, so powerful, that I could safely count on her to take me to that magical place where ‘being’ was enough. No need to think or rationalise or judge. Just sit there as these incredible sounds created such a tumble of sensation that sense of self, of life, of things to be managed, done, dealt with could slip away.

Effortlessly the sounds plunged so low you felt yourself falling with them, then just as effortlessly you felt sinews stretch up as the notes climbed up and up. I have no idea how a human being can do that, but I am so grateful she can. The world wants us adults to pay attention so hard to so much that removes us from our sense of simply being, that distances us from the essence of our spirit in the world, from that ability to be with others quietly, observantly. Perhaps for religious people this can be achieved through prayer or contemplation of God. I often think music must be my religion. Not all music, not always. But when music as beautiful as that is played and sung as perfectly as that, well then yes it does feel spiritual. I long for it almost physically, chase it like an addict.

I have no rational, technical, analysis of that concert to offer. I cannot explain if this cadenza was good, that aria better than another. But I can offer my experience – my experience of utter joy, of freedom from the endless impoverished world of rational thinking and surface level being, of time held in abeyance while life energy at its most fully spiritual is replenished. Our lives are so filled with noise, and busy-ness, and demands to pay attention to the surface of our experience here on this amazing planet. Ann Hallenberg’s singing cuts through that, her voice and artistry craft a magical place where we can once again simply be. Be thrilled, be absorbed, be stilled. Really with music as beautiful as that I need nothing else. I am that little girl lying on the floor again. I am neither here nor there. Neither this nor that. All is fluid, I am swept into the sea of experience, fully alive, experiencing life so directly and richly and fully I long for it again almost as soon as it ends. Could anyone give us a more precious gift than that?

Finding my way out

Lanark 77 (1)
I already knew I wasn’t ‘right’ that first day I walked through the gates of Lanark Grammar, the below knee skirt my mum had bought for me at the start of the summer holidays nowmid thigh after a huge summer growth spurt. The boy’s shoes with the compasses in the soles, the shirt and tie and blazer, respite from the tights and skirt that trapped me in an illusion of femininity. A crowd of older girls were waiting to tease the new girls. As I walked awkwardly by a chorus of laughs greeted me. These were girls with breasts and ‘hair dos’ and eye shadow and all manner of signals that said ‘female’. I knew that this was not who I would be, or wanted to be.

I hated wearing skirts. I hated being a girl. I didn’t want to be a boy, but I didn’t want to be a girl either. Not if it meant playing with Barbies and wearing skirts and those ‘weird shoes’ that looked like ballet pumps. Or worse, heels. And not if it meant not climbing trees and playing football and getting dirty and building giant papier maché landscapes for my collection of Airfix WWII tanks and jeeps. I watched old movies on TV and struggled later to work out what it meant that I wanted to be Cary Grant kissing Sophia Loren. I hated being a girl, so why was I so drawn to her, the most womanly woman I could imagine? Shouldn’t I like Cary Grant more? And why though I hated everything girly did I feel such an affinity with Ma Walton, and dream of having lots of children? Nothing made sense. There was no one like me in my life, no one who could help me answer the question ‘what am I?’

A few days later the answer appeared. A beautiful, astonishing, breath taking senior walked by us in the corridor. I could hardly breathe.  ‘Is that a boy or a girl?’ other 1st years speculated. No one seemed to know. I suppose I must have been vaguely aware that the speculation was aggressive, not supportive, at least I knew I shouldn’t show my interest. And I knew something else, for despite the speculation I knew right away she was she, she was me, I was her. I had a role model.

I found out that she was called Horse and was known for being musical. I decided to try and get near her by joining the music club, and so my short lived career as a bongo player was born. I still think of her when I hear bongos and though I don’t recall how often my bongo bashing achieved its aim of closeness I do remember it was enough times to fuel my obsession. Times when I would sit in the music room, or the school hall when she was performing on stage, my throat burning for lack of oxygen as I held my breath in awe. In those moments my mind would race trying to take in everything about how she dressed, moved, wore her hair. I would hang around at the school gates at the end of the day hoping to see her. One day I very nervously followed her, I’m not sure with what intention other than simply to be near someone who made me feel less alone. She walked by the hotel we lived in and I almost burst with excitement to think that she had been so close to my home. For days afterwards I would gaze out of my bedroom window down to the street where she had been, conjuring her up in my head.

In the summer holidays I began to nag my parents to let me cut my hair (like hers, I didn’t say to them). I told them I wanted to go the barber on the High Street, and somehow eventually they relented and let me. I look back now in astonishment that they did, that I did. That painfully shy girl took herself off alone to the barber, sat in a chair waiting her turn, endured the suspicion of the barber when she told him to just cut it short. As I sat on that unfamiliar and exotic barbers chair, worn leather arms gripped tightly in fear and anticipation, I took in the smells of aftershave and balms so different from the hairdresser. I loved how stark it all was; no pink, no frills. I loved the look of the razors and shaving brushes arranged on the shelf. My eye caught in the mirror the scantily clad woman on a calendar behind me. The barber looked uncomfortable as he realised what I was looking at and shoved my head down roughly. As I watched the tresses fall away I felt for the first time the power of being in charge of my own identity.

We left Lanark in my second year. I couldn’t tell anyone why it broke my heart, though by then I had found another girl my own age who seemed familiar too. Even if I had told them they wouldn’t have understood why was I so sad to be leaving someone who didn’t know I existed. Wouldn’t understand that knowing she was in the world gave me a sense of being a ‘something’ I hadn’t had till them. I didn’t have any words for the something yet, and it would be many years before I would become comfortable, would find an identity that was my own. But for those couple of years when she and I shared a school, despite the fact that I am sure we never exchanged even a word, I had a sense of being with, of community, I wouldn’t find again until my early 20s.

Years later I would hear her name again, and with a shock realise that the singer on TV was her. My role model. The person who helped me feel a little less alone in a world I knew even then was going to struggle to let me be me. And years again before I would find tears in my eyes reading her account of those times – of how alone and bullied she was. A wash of shame as I realised that it never occurred to me back then that she was suffering. I suppose that’s the thing about role models – we use them for our own ends and rarely think of their experiences. Back then she seemed supremely confident and powerful. I knew people talked about her but somehow never really thought about how she felt. I was so desperate to know that I was not alone and that it all might be ok after all I blocked out any notion that it was not ok for her.

She was in the back of my mind when some friends and I decided to open a gay café in Edinburgh – the Blue Moon – in the late 80s. We’d all been involved in gay activism, fighting Clause 28, running demos and dreaming of a world that wouldn’t find the need to spit on us in the street or deny us a place in the everyday. The idea of creating a space where people could see each other, could find each other, was an idea not to be let slip. I’d watch them come in, clutching their distinctive paper bags from Wilde and West bookshop, nervously sitting alone, watching intently everything and everyone around them,as I had watched her. The alone finding their home. There amongst the outrageously out, the quietly out, the not very out, they would find their way out too. It was the first gay café in Edinburgh, at a time when finding each other was still always hard and often dangerous. Maybe it was the Ma Walton in me, but I loved seeing them slowly find themselves. The day they would first talk to one of us, or appear one day with a friend on their arm. It makes me a little sad to think that all these years after the Blue Moon we still need role models, still need those places of sanctuary. Sad, but grateful that they are still there. Sad, but reminded of how precious they are.

And Horse – well, she’s still being a role model, still being musical, still helping people understand that a world in which so many feel that they have to be careful about being themselves is not ok, and not inevitable.

 

 

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