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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.

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