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The Girl Who Wasn’t

In my memories she was almost always in the distance. The girl who broke the rules. The girl who wasn’t.

I suppose I was too frightened to get near, to close the gap. I was certainly too frightened to speak to her. Apart from anything else she was a senior girl and I was a first year. We might as well has been from different planets. Besides, she was beautiful. Something new in a world that seemed till then to have only two options – aggressively male, or aggressively female. People would often whisper that she was really a boy, not a girl. But I knew right away that she was neither. She was something new. She was a girl, but one who defined herself for herself. She was unique. She was true. She was the girl who wasn’t, and I was besotted.

Though I was scared of being too near her, I wasn’t frightened of her. I wasn’t even frightened by what I heard in the viciousness of those who talked (endlessly) about her. I remember mainly just feeling frightened that she might not see in me what I had seen in her. Would laugh and mock me for daring to think we might be the same. Daring to think that I too might be a girl who broke the rules. That I too might be a girl who wasn’t.

Because if she didn’t see me as I had now seen myself in her, then I would lose all hope of escape. When I discovered that she existed I started to believe there might be a way out. I began to dream that there might be enough of us to make a different kind of world. One made for us, instead of one that wanted us to change for it. I was so overwhelmed, so desperately happy to have found I wasn’t alone, I couldn’t take the chance of being told I was wrong.

I suppose I had always felt something about me was not quite what the world expected. In the looks of teachers and family and friends there was a judgement I understood to be a mix of pity, fear, and concern, just as I understood that whatever I was not, I couldn’t be.

I was much taller than most girls, and for a bit I thought maybe that was it. But then I started noticing all the things I liked that other girls did not. Matchbox cars. Action Man. Meccano. Taking things apart. Putting things back together. Climbing up things. Sliding down things. Airfix kits. The Eagle and Commando comics. Football. The even-for-back-then old fashioned ironmongery shop up the road with its smells and tools and old men in brown coats who seemed to know everything about fixing everything. And I noticed the things the other girls liked that I did not. I had no use for dolls, make-up, dresses, and pretty shoes with little heels. They all seemed instruments of torture designed to make me sit nicely, be quiet, be good. The things I was constantly told I should do and be. The things that made me feel like an animal in a cage.

All I wanted to do was go where I shouldn’t. Do what I shouldn’t. Climbing across roofs, running across the dam on the River Clyde, exploring still derelict buildings in New Lanark (long before it became a tourist attraction), riding bareback on the angry jet black pony that all the girls (and, I was pleased to know, most of the boys) were too scared to try. All I wanted was energy, danger, mess. I wanted life to feel so much bigger than it was. I wanted to be up, to be fast, to be brave, to be everything girls in small town 70’s Scotland were told they should not be.

I knew I didn’t fit, but in my primary school years I just assumed it was because I wasn’t in the right place. I made a couple of early breaks for freedom, and then resigned myself to be there until I could set off and find the place I was meant to be. It didn’t really occur to me it might not exist. That I might be the ‘problem’. And then I went to big school. To Lanark Grammar School.

Almost immediately it became clear to me I was never going to quite fit in, there or anywhere. It became clear that I was the problem. I was smart, but didn’t look like the other clever girls. I was sporty, but not in the way a girl should be. My boyish body and look drew the ire of the older girls who lined the school gates at the start and end of the school day or loomed in covens around the playground at break.

I immediately attracted the other outsiders. The ‘bad’ boy who decided to be my defender from the older girls trying so hard to taunt me out of my boyish appearance. The boy who didn’t like football. The girl who delighted to find another girl who actually liked reading, and who shared my excitement when a kindly teacher saw that I needed more than the Famous Five and Swallows and Amazons.

I still remember the moment that kindly teacher showed me into the senior school section of the school library and told me take anything. Could I have known what I was picking? I doubt it. But it was with disbelief I devoured the Mary Renault book I had chosen. The book with subtle homosexual themes that I instantly understood, without really understanding.

In my misery I was beginning to agree with the world that I was the problem, when I became aware of her.

I wish I could clearly remember the first moment I saw her – the girl who wasn’t. But of course our memories are rarely obliging. I can just remember not long after starting big school being aware of a figure in the distance. Whispered insults as she passed, much more vicious than the low grade mockery aimed at the nearly six foot tall weird new girl.

I do though remember feeling my heart in my mouth when I saw her away from school for the first time. Saw her close up, not hidden amongst the crowd of other big kids. She was walking past the town library I spent most of my time in, furtively trying to gulp down ‘grown up’ books I knew I would not be allowed to borrow. I was coming down the steps of the library with a pile of what even then I was referring too disparagingly as “kid’s books” and there she was, passing by right in front of me. All of a sudden I just knew that she was the most amazing, beautiful, person I had ever seen. And that we were the same. I was 12, and suddenly my difference had a mirror.

From that moment she was all I could think of. I followed her whenever I could. Tried to get near her, but not too near. Craving and yet fearing her closeness. Someone told me she was musical and played the guitar really well. So I joined the music group thinking I might see her. It was too late in the term though and most of the instruments had been claimed. All that was left were a trombone and the bongos. So the bongos it was. I still think of her whenever I hear them. Or hear Paul McCartney’s Mull of Kintyre…

Now Mull of Kintyre is not, admittedly, the first song that springs to mind when thinking of the bongos. But for some reason I had concluded that if she heard me playing it she might notice me. In retrospect she probably would have. Though not for the reasons my addled 12 year old brain believed. But I was in love and love and common sense, or taste, rarely go hand in hand. Though maybe love, like music, is simply our souls resonating off each other. Certainly what I felt was more than the endless crushes I would later have on other girls. It was a strange and exciting mix of obsession and recognition, of fearfulness and encouragment. Some deep sense of belonging that I hadn’t know until then.

While I can’t clearly remember the first time I saw her, I do clearly remember the last time I saw her. We were moving away and I couldn’t tell anyone that my heart was breaking because I would never see her again. Breaking because all I wanted was to be old enough to speak to her. To tell her my secret – kept close as I had seen what they had done to her, the girl brave enough to come out so young in those bleak 70s days.

By then I had been at Lanark Grammar for a year and a half. Long enough to have begun dreaming that one day ‘quite soon’ I would be brave enough to speak to her. Sometimes she would pass by the hotel my parents ran and I’d catch sight of her and rush out to follow her with my best Commando book spy moves. When I wasn’t doing that I would spend hours either on the roof or in my attic room reading Shakespeare’s love sonnets from the book I had asked for when I won a prize in primary school and which was finally coming in to its own.

I hadn’t seen her at school for several days and had been lurking morosely in my room, desperately hoping to catch a glimpse of her before we left. More and more convinced I would not. Until suddenly, the day before we were due to leave, there she was. On the other side of the road. My idol, my obsession, my mirror. Turning up the street the library was on.

I ran down the stairs, out of the hotel, and flew unthinkingly across the road I had a few months before been knocked down on. I could think of nothing else but seeing her again. But the girl who wasn’t had disappeared. I ran into the library hoping she might be there only to be greeted by silence, by the absence of her, by men and women all looking exactly like men and women were supposed to. It made me want to scream. I was a caged animal again.

We left and I never knew what happened to her. I grew up and became a girl who wasn’t too. I found a family of other girls and boys who weren’t. We laughed and loved and made a place for ourselves just as I had always imagined. Made it so well the rest of the world started to change too. One day a friend told me excitedly about a band with a singer she was besotted with. A beautiful, androgynous, singer. Her name was Horse. I recognised her right away.

 

Design community – we need to talk about disabled people

Postcard framed against the audience at the conference - postcard text reads Future Gov - Transforming Government.

I was invited to give a talk about the role of design in radically transforming government at a conference organised by Future Gov in Newcastle in May 2019. I started off delivering a talk about the work I am involved in at Scottish Government building user centred service design into the heart of how we work. But I had an issue that wouldn’t let me leave things at that. I am grateful to the team at Future Gov for a chance to get my thoughts out. What follows is an after the fact and no doubt less garbled account of what I tried to say…

I could at this point carry on with the so far so standard presentation.

I could. But I am not going to.

Don’t get me wrong. I am unbelievably proud of what we have helped to achieve in building a design culture into Scotland’s public services, Scotland’s government.

The fact that in Scotland we have both a National Performance Framework for the country and a Social Security Act and Charter that effectively both say nothing for us without us, nothing for us that does not treat us with dignity and respect, fills me with pride.

The design community inside Scottish Government is a source of huge inspiration for me and more than anything gives me hope for my future as someone who has more reason than many to use public services.

But the thing is – I am so unbelievably tired of being a disabled woman in a world that is not just disabling me, it’s doing that by design. With design.

Now don’t get me wrong. We in the design community in the private and third and public sectors are making a lot of progress in getting better at designing and delivering products and services. Including for people with disabilities. But we are not changing the world for disabled people fast enough, consistently enough. We are still designing products and services that disable, disempower or simply ignore disabled people.

Part of the reason for that is that we are not diverse enough ourselves. The most pernicious impact of a lack of inclusive and accessible design is when disabled people themselves cannot be present in the design work force.

One in 55 people in the UK is a wheelchair user, and by far the majority of those are permanent wheelchair users. So where are they? Because 1 in 55 people I encounter in my daily life is not in a wheelchair. At least not here – the ratio goes up considerably when I am with my partner in my other home Munich. In Munich I see wheelchair users all over the place. It’s normal.

I’m tired of not seeing myself represented in my community. Tired of looking around rooms and not seeing any other visibly disabled people.

Again, don’t get me wrong. I know that there will be people in our community, people here today, who have hidden or not obviously visible disabilities. And I know that diversity, in particular intersectional diversity, continues to be a problem for all sorts of people, not just disabled people. As a woman over 50, as a lesbian, as a mother, I know there are so many diversity challenges in our industry. But I also know that statistically there ought to be more visibly disabled people here, and in our community. Which is a worry as I know how crucial design is to making the world more inclusive and accessible.

In 2018 the Design Council published a report on the state of the design industries in the UK. It acknowledged that design has a diversity problem.  It gave stats on women, on BAME, it even acknowledged problems with socio-economic diversity. But it explicitly did not mention one group. Disabled people. 

Everything but…. Do you know what it feels like to be the forgotten of the overlooked? Well it feels pretty much the same as every time I am invited to a “stand up”, or asked to take part in a workshop that presumes I am comfortably mobile, or walk into a building that has no easy access, or am taken to a service lift to stand with the dirty dishes and deliveries to get from one floor to another, or left the only person sitting at a ‘stand up buffet mixer’ at an event. All of those things and more have happened to me. Happen to me. Routinely. Every day in some cases.

I am so unbelievably tired of us not getting this sorted. I am so unbelievably tired of how painstakingly slow progress in ensuring that our world is an inclusive and accessible world has been. Because those words – inclusive, accessible, they just mean fair. And our world is not fair and we in the design and digital communities are as much a part of the problem as anyone.

I have secondary progressive MS. Of all the people who have had this as long as me only 1 in 50 is still working. Every time I remember that I feel sick. I know some of those people are absolutely unable to work. But many would be if the world was better designed to accommodate their needs. I am 1 in 50 because I am lucky. Not because I am special. Lucky to have a well paid job so I can afford the huge additional costs of being in the world with a disability like mine. Lucky to work for a supportive employer. Lucky to be senior and old enough to be confident and outspoken. Lucky I can still get about with crutches. Lucky to have enormously supportive friends and family.

In the mid 80s I came out as lesbian in a world that was still at that time actively discriminating against me. Back then it was hard to imagine that just twenty years later we would have the freedoms we now take for granted (albeit some of us will never be quite so sure those freedoms are here to stay!).

I know that apparently unthinkable changes can and will happen. I am living proof they can happen. So I am asking other disabled people already working in the industry to ‘come out’, band together, and campaign for change. I want all of us to start noticing where we are not and start asking themselves – where are they, why is this happening, and what can I do to change this? After all, if the design community can’t change this what hope for the rest of society?

I believe in the power of design. I believe in taking the time to identify and understand the right problem and solve the problem right. This problem still exists because we are not asking the right questions of ourselves, aren’t working to solve the right problems. The Design Council cannot account for what we as an industry do not count. Cannot notice what we do not notice. Cannot drive for change we are not driving for.

Change can happen. But not without questions and not without action. So please, design community, start asking those questions. Start identifying those problems. Start solving them.

Design community – we need to talk about disabled people. And then we need to do something.

Falling is Easy.

A pair of crutches, black with orange hand rests, leaning against a wall by a window.


There’s a certain kind of courage required to get up after falling. To move forward again after grinding to a halt. Especially when what will happen when you stand, when you move forward, is so uncertain. It’s not an obvious kind of courage. Not the courage needed to walk into a burning building, face down an armed person, or take on a mob. It’s not even the kind of courage needed to challenge an orthodoxy or tackle an injustice.

Instead it’s a quiet, shy kind of courage. It’s the kind of courage that helps you get up time and time again. Drives you to move forward time and time again. Each time a little less certain that up can in fact be achieved. Each time a little closer to the day when up will no longer be an option. Each time the courage to get up and move must be summoned while the possibility of both up and forward being achievable is in fact a lottery – at the behest of fate much more than one’s will.

Falling (and its denouement – landing) is, by comparison, easy. Especially now that MS has taught me that how I fall, how I land, is no longer in my control. Nerves and muscles cannot react quickly enough to minimise the fall. The watching brain is reduced to the status of impotent viewer of a rather predictable drama it failed to anticipate and cannot mitigate. Falling is now simply an unavoidable drama – like the repeats of old crime shows and soap operas that litter our tv schedules. It’s a drama with only vital question – how will I land? 

Landing, by contrast, contains all the seeds of a good drama: danger; the unknown; the inevitable shock of discovery as the impacts make themselves known in a violent flash.

The shock unfolds and the watching brain switches into detective mode. What hurts, what can I move, what will I do now, who can help, how bad will this be? Adrenaline and shock help the frightened soul and battered body through the first few moments. Pain kicks in to direct the brain’s attention to the obvious physical damage, and protect it a little longer from the more insidious, harder to treat, psychological impacts. 

The physical damage will mostly heal with time, medication, rest, exercise. That bit requires little courage, mainly just patience. But the psychological damage that falling does, well that requires something altogether harder to deliver. 

The knowledge of one’s inability to control events and protect oneself is insidious and powerful. It deprives us of all the comforts of denial and ignorance and forces the inevitability of some rather out of fashion concepts – suffering, pain, death – fully to the forefront of our minds. These ancient ideas seem so antithetical to our contemporary values. Surely suffering is simply a sign of failure? Surely a life free from pain is a right? Wait, you mean death is not optional? Call the manager, I have a complaint to make…

I have learnt to fall, learnt that falling can be resisted but never fully prevented when MS is your life partner. But I am still learning how to get up. Since what up means changes each time. Who I am, where I am, what is happening around and to me, all these change each time I fall. It took me a long time to realise that just because an approach had worked in the past  there was no guarantee it would work the next time. 

Indeed there was a good chance that relying on the familiar routines will be counter productive. The muscle that once could be counted upon to aid the effort to get up no longer works, or has been the recipient of the latest fall’s damage. The meditation that once helped calm panic may now simply trigger it. The exercise routine may simply aggravate an injury or cause a spiralling depression as the progressive decline of capacity that is the most upsetting feature of MS is forced into view.

From the most basic, like how to move safely into a comfortable position, to the most complex, like how to rebuild shaken confidence, what worked before may well not work this time. But here’s the tricky bit – there is no knowing until you try. Getting up after a fall is a lesson in the inevitability of failure to learning and accomplishment. There is no perfect way to get up, physically or psychologically, after a fall. There are some basic principles, and some lessons learned, that can be brought to bear. But whether they will work, and if they don’t what will, only the circumstances of fate will teach us.  

We crave familiarity, we human creatures. We seek routine, value the sensation of being skilled at something, feel good when we can think ‘aha, I know how to do this’. Our comfort zone is a very small space indeed, packed with what makes us feel (to use a lovely old Scottish word something akin to the notion of hygge) – cheery. It’s the cave to which we retreat when the world seems too big a challenge for us. Denied our cheery hideaway, forced out of the cave into the unknown world of a new now, we are left distraught, panicked, fearful. My old tricks are not working. That *should* have worked. Oh god I don’t think I can do this. 

But if we can hold on to the one anchor that will remain unchanged no matter what, we have a chance. That anchor is simply that we are good at learning from failure. Despite everything that our modern world thinks about the idea of failing, something older in us knows that there is no human accomplishment, from surviving birth to navigating death, that has not been the result of the simple mantra ‘try, fail, try again’. Every thing that was ever created by human hand and mind is the result of our ability to fail over and over again without giving up. 

I fell. I got up. I tried some things to help. Some old, some new. Some worked. Some didn’t. Everything changes, even change itself. There is no end to reach. No perfect. There is just constantly trying.

There is a certain kind of courage required to get up after falling. The courage to try. 

Only Connect

I wrote a blog post here a while back about someone I loved, and the experience of grieving his loss. I write this blog mainly as a way of talking to, comforting, helping, my future self. But my words sometimes elicit a reaction in others which they share with me, and in that moment of sharing I get an unexpected by product of these missives to myself – a moment of connection that comes from knowing another has recognised something in my words. Which explains how I found myself on my train home tonight with tears streaming down my face, having just reread that original post.

It’s the same journey I made travelling home from the hospice in Edinburgh the day he died. That day, also in summer, I got off the train at my stop, Leuchars, and looked up at a stormy summer sky full of angry clouds mirroring the stormy, angry, grief I was feeling. Then suddenly out of nowhere a military jet from Leuchars air base burst out of the cloud right above my head, and proceeded to fly almost vertically above me. The engine noise was absolutely deafening, and somehow it pulled out of me in a huge surge all the love and sadness and joy and pain of those last days losing him. And I just screamed a mix of elation and despair into the veil of that jet’s roar. It was as if the universe gave me that as a final gift from him.

Tonight I got off the train a swirl of different but equally enormous emotion, looked up, and this is what I saw…

Cloudy sky with sun rays breaking through.

I didn’t scream this time, but smiled and cried and felt my heart overflow once again with love for him. Marvelled once again at how lucky I have been, how grateful I am, to have known him, had that love in my life. Perhaps all the more so since it was not a romantic love, but the love of two people whose minds and hearts and interests and passions found energy and comfort and joy in each other. The universe decided we were to be uncle and niece. But we knew, and shared before he died, that those conventions aside we were two people whose lives were touched and shaped and changed for ever by our love for each other.

In that moment of connection with my reader today I was drawn back to the precious gift of connection with him. Reminded that it is in grief that we are connected once again to the experience of love and all the ways that transcends everything else in our lives. Death may have taken him, but it cannot take that. Not as long as my words find me again.

Only connect. Only love.

Diversity and Inclusion in the Civil Service – You’re Welcome,

A poster on a wall, poster says the questions you didn’t know existed are the ones you most need to answer.

This is a longer version of a talk I gave at Civil Service Live 2018 in Glasgow. I was asked to reflect for 5 minutes on why I am happy to agree that the Civil Service is a great place to work.

I am going to approach this challenge with A Question, Two Stories, and Three Challenges for you.

First – the question. How many people using wheelchairs have you seen in the sessions you have been in today? (On the day two people said they had seen 1 person in a wheelchair and 1 person had seen 2, out of an attendance of around 2000 people).

I’ll come back to that in a minute, but first a bit of a story about my journey to the Civil Service. Which was even for me pretty long and winding. But helps explain why I think the Civil Service is such a great place to work.

I started working in the late 1970s in my dad’s pub, cleaning toilets. Which was great as it’s all been up since then. From there I graduated to 30 years working in what my mother still thinks is an unsuitably diverse range of jobs. Everything from running a café to support worker for vulnerable people and families in the community. From managing a news monitoring agency to operations director on an emergency aid project to Bosnia. Then from the mid 90s onwards in digital, in both industry and academia, as designer and a design ethnographer.

Until 4 years ago when I finally managed to add civil servant to that list of sectors I’ve worked in. And make my mum happy by getting a proper job at last. I am head of Scottish Government’s DDaT User Centred Design family of roles and the Chief Designer in the Digital Directorate. A role I adore but being honest am a bit surprised to find myself still in.

When I joined I thought it would be for a stint – 2 maybe 3 years. I’d contribute something, learn something, and move back to industry or academia. What I didn’t expect was that there was so much to learn, so many different ways to contribute, and most importantly of all, so many amazing people doing so much that seemed not just important, but crucial to my family, my life, my country. And I didn’t expect to join an organisation so engaged with diversity and inclusion.

You see I could have told the story of my long and winding journey to the Civil Service through another lens. One best summed up in one phrase – I have spent my entire adult life being excluded, and fighting to be included. Over 30 years of being excluded first because I am a woman (I never did get permission to take technical drawing at school instead of Home Economics), then because I am a lesbian (when that exclusion was sometimes also in the form of violence), then because I am lesbian who is also a mother (yes the two boys really do have two mummies, I said, over and over and over again), and more recently because I am now disabled.

One of the biggest reasons I am still happily here at Scottish Government is that the Civil Service wants to change that culture of exclusion and, more importantly, encourages and enables me to help it do that.

So back to that question I posed. According to NHS England data from a couple of years back there are roughly 1.2 million wheelchair users in the UK (and a bit over two thirds of those are regular users). That’s roughly 1 in 55 people at any given point using a wheelchair, and about one in 75 of the UK population using one most of the time. Now I know I am being too simplistic in my use of that data, and I know that the visibly mobility disabled are but one part of the disability community. Still, as rough and ready metrics go it’s got some provocation value. And it reflects my own anecdotal experience as someone who lives some of the time in Munich where I see many, many, more people in wheelchairs out and about in daily life.

So my first challenge for you is to spend some time really thinking about where all the wheelchair users are. Ask yourself – are the 1 in 55 in my office? My department? If they are – celebrate and share that. If they are not, ask yourself – why not?

For my second story about why the Civil Service is a great place to work come with me to an event I was speaking at recently. As often happens there was no ramp to get up on the stage. OK it was a low stage, most able bodied people could get up easily unless they were in heels, in which case the two small steps with no banister the organisers provided would have helped. But my heart sank when I saw those two small steps. They meant my ascent to the stage was doomed to be both hard and frightening. I have MS, my left leg drags, my balance and vision are awful, and if I fall I can’t save myself the way an able bodied person might.

But the physical challenge and potential physical impacts of that inaccessible stage were not the worst thing about that situation. It was the psychological impact. Because what the lack of ramp and the need for me to ask for that said to me was – we were not expecting you, we were not really thinking about you. You don’t really exist for us. We don’t think people like you routinely belong here.

It’s how I get told “You are not welcome”.

Now don’t get me wrong, the Civil Service still tells me I was not expected more often that it should. But the support and encouragement to keep challenging I get from everyone from my perm sec (thank you Leslie Evans) down; the ever growing levels of better, richer, deeper understanding of the needs of people like me I see growing around me; the improvements small and large I see rolled out continuously; and the support and encouragement I get to improve my own understanding of the needs of others with experiences of exclusion I do not share, these all tell me daily that this is truly a Great Place to Work.

My second challenge to you is to go back to your office and be part of that continuous improvement. Really think about the ways in which you don’t make certain groups of people welcome. And make one improvement.

It could be something as simple as deleting the word special from the forms you send to people asking if they have “special” requirements. There is nothing special about my need for a ramp, far from it, it’s my normal. Labelling it special is your special way of telling me you don’t expect me here.

Or you could try switching off fully justified in your word processor to help people with visual problems or dyslexia read your content more easily. Or it could be something I cannot even imagine as I too have much still to learn about how to pull down what excludes and build up what includes.

Having worked for 30 years pretty much everywhere but the civil service I am absolutely certain, with the conviction of an outsider inside, that our commitment is real. Even as I am certain that our challenges are still great and our progress still slow. Which is why my third challenge to you is to go back to your office and look around and really notice all the ways we *do* make people welcome, all the changes we are making to make exclusion a thing of the past. Take heart from that. Use that to empower you to keep doing more and more of those ‘one small things’.

The commitment I see in the Civil Service, which holds me here still, is not just real but vitally important. You need to believe in it and be part of it. Because if we can’t make diversity and inclusion the norm, routine, unremarkable, then who will? If I am not welcome here, what hope for anywhere else?

Unexpected Tears In The Back Of A Taxi

Was it the notes reminiscent of a song you shared with me, drifting though the traffic noise? Or the screeches of excited kids running into the city square recently transformed into an ice rink? Was it the warmth on my shoulder, caressed into my otherwise frozen body by the heat of the previous occupant of that cold taxi inching me slowly through the Christmas crowds? Was it simply the shockingly early darkness of a Scottish winter evening?

We laughed often of the madness of living here in Scotland – we two, the sun lovers, the wanderers. You teased me every winter when I complained, reminded me every summer when I told you of how much I gloried in sitting out at nearly midnight, darkness only just fallen.

Maybe the grief just sits there all the time, waiting for a good moment to pull itself up out of the dark corner it calls home, feeling its way into my heart. The back of a slow moving taxi on a dark Edinburgh evening probably felt perfect. A safe space. So there it was. The familiar dark pain sliding its way through the ventricles and arteries of the softly, persistently, aching heart you left me when you left me. As ever the grief shocked me with its impertinence, the violence of its desire to be felt once again.

The tears welled up through my now inflamed and raw again heartache, up through my clenched throat, up through the years of missing you. Up through everything the universe had stolen from us too early, too quickly. Every laugh, every shared outrage at the world, or the state of the media, or the impossibility of finding a pub without muzak. Every phone call chattering about the latest book read or film seen. Every meal sharing our inability to reconcile the things we had seen and experienced with the honest conviction we both shared that life is so inexpressibly, beautifully, full of wonder. Every email revealing ourselves to each other again as undimmed in our belief that things could be, would be, better someday.

We two faithless, godless, souls found common ground in the common good. Believed despite all the evidence to the contrary in the essential goodness of humanity. Could rage with anger at the injustices of a world overrun with heartlessness and cruelty one minute, and weep with joy the next reading extracts to each other from Jimmy Reid’s Rectorial Address to Glasgow University.

I sat in the taxi and realised that of course it is only when the grief finds its way back in to my heart that I remember most fully all the love we had, all the love I still feel for you. You made me believe in joy, helped me face horror, taught me that asking questions was far, far, more important than answering them.

Ah grief, what a strange kind of blackness you are, shining a light into my aching heart. Bringing his love, my love, our love, back into the light.

Never leave me, grief. Never let me forget to feel all the love we had. Come back whenever you can. Unexpected tears in the back of a taxi are a small price to pay to find my way back to that love. A small embarrassment to endure that I might once again unleash the wonder of a life that has known such love.

I went home the night of my taxi ride and sought out the song you played for me on a different night, nearly 40 years ago. The night I asked you about the photographs I had seen in your study. Photos that had left me shaking with fear, and a need to ask questions. The night you told me what you had seen in South Africa making your film about Steve Biko. You gently unleashed the horrors of the world on your curious young niece and immediately equipped her to endure them by stoking not quashing her natural curiosity. Equipped her by sharing the beauty of the world as you revealed its darkness; for when you had finished gently, truthfully, answering my questions you played me your new Miriam Makeba album. It was that night the never ending dance between darkness and light that is life become clear to me.

I went home the night of my taxi ride and I let Miriam unleash expected tears this time. So that I could thank you for everything you gave me, feel once again the love that we shared. And remember once again that grief is simply the key to love.

Legless Again

I don’t feel angry for long anymore. Just a few moments. I’ve learnt you can’t allow yourself to feel that angry that often. Just long enough to make your point, or file away under the Life as Disabled Person (Indignities Of).

Travel is the worst of course. And air travel the worst of the worst.

I have 2 full time jobs. One I get paid for and one I don’t. The latter is living as a disabled person in a world that exhibits a pro-active disinterest in understanding my needs. I depend on crutches to be mobile. They are my legs. To travel companies they are ‘hand luggage’ and treated with the same lack of care everyone’s hand luggage is..to be chucked in a crushed overhead locker. 

Though that is if the flight attendant has decided that’s where they should go today. You see as well as the obvious physical barriers to travel as a disabled person, you need to adapt to the world’s desire to infantilise you. Everyone now has the right to tell you what to do or take your control away from you. “You have to give your legs to me.”… “You have to put them in the overhead locker.”..  “You have to give them to me”. 

Let’s say today it’s ‘you have to give them to me’. 
A complete stranger publicly demands that you give them your legs. In front of others you have to abandon the illusion of self-determination. A stranger can touch your precious legs, take control of them, at their whim. Can take them away and not tell you where they are putting them. You sit there now, legless, wondering where they are. If they are safe. Now imagine you have reached your destination. You’ve paid for a seat near the exit to get out quickly. But your tormentor has forgotten he has your legs. You sit fretfully trying to get his attention until finally, sighing, he resentfully returns them to you. As if he’s time to be worrying about your hand luggage…

Now let’s say that as you patiently hand your crutches to the attendant the next time you are flying she snaps at you, ‘You have to put them in the overhead…’ with that same look of ‘how dare you’ reserved for someone asking them to put their bag in the locker for them. People behind you tutting as you hold up the boarding. You struggle to rearrange baggage to get them in to the already overcrowded overhead lockers, to be squashed and (on more than one occasion) broken.

 
Imagine if every time you boarded a plane you had to remove your legs and put them in the overhead locker? How many times have you sat for a whole flight fretting about whether the guy who boarded late and shoved his huge heavy bag in on top of your stuff has wrecked your coat or broken that bottle of whisky you bought in duty free? Imagine now if instead of spending the entire flight imagining that broken bottle or ruined coat you were imaging your broken legs. Fretting about how you’d get off the plane, let alone get home, without them. You arrive and now, legless, you must stand up and struggle to get your crutches out the locker, hoping they have survived, tutted at as you slow down the expert ‘de-boarder’ desperate to be first off.

I’ve given up guessing what ‘the rule’ (as I am firmly told exists if I query the ‘rule’) is that airline, that day, that flight attendant. I have flown on the same plane, same route, same company twice in 2 days and found the ‘rule’ changes. When quizzed where this rule comes from, where the training manual or guidance is that this ‘rule’ is captured in I am given the ‘how dare you be pushy you’re a cripple you should be grateful’ look. Only when pushed will I hear what I have heard repeatedly ‘it is not written it’s how we are trained…’.

My right to dignity, to self-determination, to safe and secure treatment of my ‘legs’ is not a given. It’s not even a regular occurrence. It’s the exception (almost always, it turns out in conversation, because the flight attendant has a disabled relative). 

Does this make you feel a little angry on my behalf? Or sorry for me? If it does well frankly my dears, I don’t give a damn. Your pity will not fix this. Only your active concern and campaigning will. Not for me, don’t kid yourself. You should actually be doing this is for yourself.

 
Oh I know; you’re invincible. You will live your whole life in a state of reasonable fitness and mental and physical ability. You will never have to haul a malfunctioning body through a world designed for the fit and able bodied. You’re special that way…

I don’t feel angry for too long anymore because I can’t do that too myself. I just sit safe in the knowledge that almost certainly sooner or later it will be my tormentor’s turn. Your turn. Everyone’s turn. Though I may not get the satisfaction of being there when it happens to you all, I do have the satisfaction of thinking right now … I told you so.  

Even better than feeling sorry, how about you help me sort this out right now? You see the pity runs the other way. I watch you all traipsing freely through the world and feel so sorry for you, knowing what I do about what one day, sooner or later, for a long time or a fairly short time, will be your fate. Sort this out not for me, but for your future self. 

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.

 

 

 

 

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