Hearts and minds

Blogging on work time cos this is work. Because I write to work out what I think and this is work thinking. (Well 5 minutes of it but...)

So I've been tasked with two things. One, provide a management dashboard which provides two level of analysis, top level easy to consume and something a bit more granular but nevertheless useful.

Yep, non data nerds, exit over there ->.

Rest of you. Hi. This is sort of a week notes thing, which I said I'd do a bit ago and didn't but also some thinking out loud.

I work for a mental health charity in Lancashire. Across 5 main sites and quite a few satellite sites which constitute a 6th, essentially, we provide two main arms of service and thus two main sources of data. We have Women at Risk - the criminal justice work with offenders, ex-offenders and low level offenders, then we have the IAPT provision side of things. Both focus on mental health, with a healthy side order of employment, housing, health, advocacy etc support.

We currently work only with women. A big focus of our work is how gender swerves the delivery, care, approach and attitude where it intersects with mental health, health and the criminal justice system. This is why I work there. I believe in what we do very much.

Because of this belief, data isn't just data to me. When I was dealing with bin rounds and other environmental stuff at Blackburn Council, I have to admit that I did sometimes lose sight of the fact there were actual people behind the house numbers. But at 55,000 addresses and counting, there are only so many stories you can tell about a missed bin or an unfilled grit bin. This is different.

There is a sense inside me that I owe something to each of the women we help to tell their story somehow, in numbers even if not in words. We couldn't actually tell 3000 stories, for a start, peoples attention would have wandered, and so this is why numbers are useful - they allow us to comprehend difficult and large without needing a tea break every 5 minutes.

So that's the why.

How. How do you rig a management dashboard which reminds everyone reading it what we are doing and why?

Weirdly, I am coming to understand that language matters. So, what do we want to tell people. Recovery rates, well that's useful - it's a key indicator of our effectiveness for heavens sake. Except under a heading of Recovery rates, I see x percentage of people entered our service at y level of depression or anxiety and exited at z level and what it does it tell me?

It's just some numbers. So is it that in the same way we accidentally other people by the language we use (and this is a fantastic blog post on the affect language can have on people, it is not an imaginary thing) perhaps we accidentally reduce people to nothing more than numbers by the language we use. So instead of Recovery rates - people who got back on their feet. People we helped feel better. People we got back into the world. People who regained themselves. All the same thing, all the same actual numbers but the terminology is so much more...positive, somehow.

So that's my proposal for the management dashboard which is going in front of Ops and our CEX. To be human, to make the numbers human, to be different in the way we refer to people than our partnerships, because we are different in the way we are with our clients than our partnerships are - through necessity, or through freedom.

The next thing I need to think about is visualising this data, as my boss wants something 'interesting' to go in front of the Board.

So I got to thinking - the one member of the Board I've met, she got the people thing. She said she loved to hear about the successes, that what we achieve and how we achieve it is phenomenal - and I don't disagree. But how do I show her, and the other members of the board how phenomenal our team actually is?

Again, I feel like the key to this is language, but also pictorial. That somehow there must be a way to represent who we are as an organisation, a culture which frankly if we could bottle it, we'd make millions from - I mean we're so start up it hurts and we're not even a start up for heavens sake...

Perhaps that's the thing. In refusing to be just like everyone else in the way we do our business, in the way we conduct ourselves, loudly and proudly different but screamingly effective - perhaps that's the key to explaining what we've achieved and how we've achieved it?

So what would a start up do? Start from nothing. No assumptions. No 'we've always done it this way'. No 'should', or 'can't'. Just... an empty A3 piece of paper with no expectations and no preconceptions.

When I come back from leave next week this is what I am going to do. Sit with the figures and the numbers, the achievements and the stories, and a blank piece of A3 people and just doodle. Be creative. Permit myself to not be a numbers person, just for a second, and indulge the bit of me that creates knitting patterns, that draws and colours and spins and photographs and stares entranced at rain falling through the light of a lamppost.

Data analysts are normally binary. I am not. Time to use that, and think differently and embrace the differently.

(If anyone wants to share their dashboards or Board presentations with me, I'd super love that - but can you do it in a fortnight when I've yanked all the crazy ideas out of my head first? I don't want to be influenced by anyone else, just for a bit. And I will of course be back processing this the entirety of next week while having fun relaxing in warm waster and turning into a prune, because that is just how I roll)

Technical Tinkerbells

All my life I've been searching for something...wait, no, wrong line.

Actually no. No it's not. Because all my life I have been searching for something: at work.

My first permanent job was as a 1st line tech support bod for a company called iDesk in Wembley. I was the only girl. I got Wing tucked - well you would. But I didn't wear make up, I didn't wear skirts or dresses or heels. Occasionally I'd leave work to meet my then boyfriend and if we were going clubbing I'd get changed at work and slap some make up on. Cue confused looks from all the lads - delayed recognition, as if the swan wasn't supposed to exist under the tomboy. You'd think red lipstick was a mask to hide behind or something...

I have spent a large part of my working life in the same situation. One of the lads. One of the boys. I am not naive enough to think they discussed things in front of me they'd have discussed when I wasn't there but I ended up flat sharing with a lot of them at some point or other and if there was ever any awkwardness I never picked up on it. And of course; boys. They'd have told me straight if there was an issue.

After a while I just presumed I couldn't do friendships with women. That there was something intrinsically broken within me. And of course that came across in my interactions with them and became a sef fulfilling prophecy. Not helpful, I now understand. Though I didn't then. The double edge sword of self awareness.

And so it was that with some trepidation that I went for an interview for a 99% female workplace. I checked - I asked a very trusted female friend what the culture was like and she told me to shut up, quit worrying and get off my ass.

So I did.

It was the single best thing I have ever or will ever do in my life.

Women. They run the world. No, really they do. Or these women do - their own worlds. They are mothers, grandmothers, aunts and sisters. They manage children (4 in some cases!), their husbands, their families, their homes, their worlds. And then they come to work and fight the good fight for women with mental health problems next to me. And I next to them. A more diverse group of personalities, accents and backgrounds you simply couldn't imagine. A more varied idea of what fun actually equals to you couldn't either. Sexuality, disability, religion...all these things are spectrums and we have people on all stage of all of them.

And we all just get along.

And I'm making friends. Friends I would introduce to my existing friends in a heartbeat. Friends I  tell the truth to. Friends I drop the mask in front of. Friends who ask, who help. Who I ask and help back. Who I feel such joy and creativity from. Such awareness - of worlds and personalities and differences and how to never make anyone feel like crap. Yet it's okay to feel like crap sometimes too. We all do and we're all just totally completely up front and honest about it. So the working environment becomes somewhere safe. A sanctuary. A place where you grow, flourish, can be brace, can be bold - but with the stabilisers on.

I want to say thank you. Thank you to all of you. You've changed my world. My perception of the world. You've opened my eyes and dropped my shoulders. You've helped me see where I fit, where I can contribute and where I belong.

You freaking rock.

Nevertheless, she persisted

My life is brilliant.

Even my childhood was, depending on the parameters you use. And perhaps for those who know the story, those few including my mother, that's an odd statement to make.

I apologise mum. You'll understand in a few pages time.

Someone I met recently explained to me what the best thing was about stepping off a plane from the Eastern hemisphere in our country. She said "not a single man was staring at me". Now think of all the things she could have said. That she didn't say. She said that.

You see, she had come from a country where not being stared at was, as a woman on her own, a luxury she was not afforded. Imagine her walking through the airport at the other end, being stared at. Undressed. I imagine her walking up and down the plane to the toilet on the long long flight. Being stared at. I imagine how I would feel if the same thing happened to me for the same period of time and I know I would wilt. This woman would never wilt, in any circumstance, or at least I cannot imagine her doing so, because she persists.

Last week, #neverthelessshepersisted trended on Twitter as a US Senator was put down, told to sit down, because she dared to reread words already written and I think uttered in Congress. She put down as being told, but persisting. It was a put down that resonated across the Western world with every woman who's been talked over, had their ideas parroted by a man and accepted despite suggesting it first, been frozen out of discussions in networking sessions for having the audacity to have a different opinion, with every woman who refused to know their implied place.

That's a lot of us.

But I lost sight of context, a context delivered to me in harsh reality this evening by Channel 4 News' interview with the accidental journalist and film maker Waad Al Kateab by the end of which I was crying. I feel no shame in admitting this. I think anyone who saw the piece wasn't the slightest bit moved, then they are a very cold person indeed. This woman, this one woman, started filming in Syria during the Arab Spring in 2011 on an iPhone. By the end, she was submitting film to the world as one of the few authenticated sources in Aleppo as it was retaken by government forces.

Inbetweeen she witnessed unimageable things. Things no woman should witness. Another woman, face covered in blood, no explanation of why - though I suspect her journey to the hospital bed she was lying on was anything but simple or danger free, though that was not the reason she came to be lying on the hospital bed. No, that was because she was giving birth. While bombs exploded around her. Now, I am not a mother, but I am a woman. And I believe there is one moment in a woman's life which is absolutely sacrosanct, and that is when a woman is giving birth. But war leaves no room for sanctity.  The baby didn't breathe for 12 minutes. For 12 minutes, an all male team of doctors did CPR, never relenting, never giving up, perhaps in acknowledgement that one more miracle that day by that point would not be too much to ask.

A trio of brothers arriving at hospital, one of them beyond rescueing. The grief, the respect, the maturity and one broken moment of the other two brothers that will never leave them, captured on screen forever, a brutal reminder that 2 brothers under 10 years of age, should never lie weeping their hearts out the side of their dead brother.

And all the while, this woman, the woman behind the lense, had her own baby at the start of the war, and by the end had given birth to another. A woman who still dare not show her face on British TV for fear of repercussions for her actions. A woman who stayed, right to the very last, in order to tell the haphazard, disastrous, chaotic, story of the evacuation of Aleppo. With her own children in the back.

No disrespect to anyone else, but personally, I'd like to nominate a new woman to be the target of #neverthelessshepersisted. What I'd really like is for her to gain the recognition she deserves. Because standing at a lecture in an unbombed, fully supplied with electric, cleaned daily, with scanners at the entrance, full security, and a complete roof - well, lets just say I have no less respect for her but this evening has reminded me that women's challenges in this world are relative.

If you would like to know more about Waad Al Kateab then I recommend the beautiful page over on Channel 4 which gathers her most gut punching films together.

#NeverthelessShePersisted

Intensité

One of the headline behaviours of autism is the meltdown.

I found myself explaining to my neurotypical coach on Friday what it felt like. He looked surprised and after processing the 2 hour session, I realised the reason why.

I didn't talk about sensory input/overload. I talked about emotional input/overload.

The typical presentation of meltdown is this: a child in a supermarket, throwing a tantrum on the floor, while an exasperated mother looks on with an embarrassed look on her face. There is inevitably  someone in the background looking on disapprovingly.

It bears absolutely no relation to my own experience whatsoever. Reason number 57 why I couldn't possibly be Aspergers. I never had these meltdowns. I've asked my mother. She has no recollection of my doing so either. What she does recollect was my lack of crying. Lack of anything. I was a 'very contented' baby. Until I learned to talk. At which point my favourite word was 'bored' shortly followed by 'why'. I didn't nap in the afternoon - mum says she so sorely wished I had because she needed the rest. I don't blame her. It must have been weird - I was her first and I just wasn't behaving the way she was being told I should be. There wasn't anything wrong - not yet. In fact quite the opposite. Ridiculously high IQ at 5. Ridiculously high reading age and vocabulary at 5. At 6. At 7. At 8.

I was social...well no I wasn't. I didn't play with dolls. Or the cradle my father handmade me out of wood. Not the dolls house he also made me. (I have no idea what happened to them or where they are now). Don't jump to conclusions. I didn't play with toy cars either. I played with nothing that required imagination - strange to think now for someone who has such a wonderful internal world to retreat to when needed. Except of course that that interns works is a patchwork made up of every experience I have had, everything I have seen, felt, heard. But I've explained that before.

At 9 it all went wrong. I stopped talking. I got headaches when I tried to do my math homework. Home was...well it was at this point things went very wrong there too.

But school was awful. The first two years less so but the point where they put me in a 'stupidly smart' group and I was the only girl in a state middle school resulted in my first day sick from school ever. It triggered something. An awareness that before that point I have been obvlivious to. I was different.  Marked. Worthy of the (wrong kind of) attention.

This should, according to the literature, have resulted in my meltdowns increasing. Being able to mask at school but coming home and acting out is so much of a classic autistic behaviour it's almost tripped into trope. Instead, I disappeared. Into myself and my head. And I didn't come out until I told my 'best friend' my parents were separating a good 5 years later. In that time there wasn't a single meltdown. There were fainting spells - a particularly mortifying moment in school assembly in front of the entire House (still a State school) in which we had to stand as we couldn't all fit. There were days when I didn't speak to anyone at all unless spoken to. More than I'd like to remember.  But no meltdowns.

We call them 'shutdowns'. I know this now. They're only supposed to last for the same amount of time as a meltdown according to the literature. The literature is wrong. Because, I think, it's different for girls.

I didn't have my first meltdown think I was 19. I punched a hole in a noticeboard in the Student Union. I'd like to say it wasn't about a boy, but of course it was (we're still friends, we still chat on Facebook, bless him). Switching from closed off to open was always going to be a bumpy painful process and it was. It wasn't all bad. A lot of fun was had. Adrenaline. Risks. Dancing all night. But those moments when I lost control scared me. Scared me to death. Because I had become the queen of control and it losing it wasn't something I wanted to be doing, least of all in front of other people. It scared me with its intensity. It scared me with its speed. And it scared me with its ability to leave me defenceless and vulnerable. I didn't have the word for it. I didn't know.

Over the years, as I got myself into more and more intense difficult stressful situations because I didn't have the self awareness yet to know my triggers, the meltdowns increased. I got called Princess. I'm sure behind my back I got called worse. I got confused because I'm not a princess - I'll muck in with anyone, help anyone out who needs it - it felt as though there were two sides to my personality - one super nice and helpful and lovely - and one who just walked out of social gatherings when leaving without saying goodbye because she didn't want to interrupt conversations and didn't think anyone would notice (yeah sorry for the worry I've caused over the years folks).

Over time, much more time, I learned. I learned what environments caused these spikes. How to recognise when one was coming and remove myself from the situation triggering it. How to self care afterwards. How to redirect the intensity of feeling, both sensory and emotional, that I could feel. I learned to give some of it to others, to take some of it and funnel it into writing and poetry, drawing and dancing. Then kitting and climbing, hiking and mountain biking. I learned to consume all of that feeling before it consumed me.

I did all of those on my own. With no knowledge of autism, Aspergers, meltdowns, shutdowns. And it really really wasn't easy. I got into situations I shouldn't have. I got into arguments I shouldn't have. I reacted in ways I shouldn't have. I alienated people I didn't want to. I ruined relationships I didn't want to. I got into relationships I shouldn't have. I left relationships in ways I shouldn't have. I have left, it is fair to say, an utter car crash behind me in some places, car crashes I am still gently trying to atone for to this day.

I'm not saying they weren't my fault. I'm saying they weren't intentional. I think that matters.

But imagine if, when I read a book on Aspergers my mum asked me to read 10 years ago, I hadn't read that all autistic people have meltdowns. Imagine if that book had described shutdowns better. Imagine if I'd been diagnosed then, or even as a child of 11 when it all started going really wrong?

Now imagine how much pain, loss, confusion, fear, anxiety, unhappiness and turmoil we could prevent in the 1 in 4 of us who are autistic females if we just sorted this out.

Please sort this out. NAS, anyone else who's reading/listening, please sort this out.

This is my truth. Tell me yours.

Putting the people back into data

So. Official job title now contains data. Guess that means that I'm allowed to think about this stuff again...

So thinking I have been. I've got qGis installed on my laptop, along with 64bit Excel. I've got all the tools and all the toys. More importantly, I've got the most important thing of all - super lovely data that's actually important to important people to play with.

When I say important people, I do of course mean our service users. people with mental health problems, debt problems, offending problems etc. You know, those kind of important people. Not shareholders. Not politicians. Actual real people.

So it's really important to me that I think about this the right way, and I use the data I have to the very best I can, to get those important people exactly the kind of services and help that they want and need.

Yep - this is a post about data. and I'm still talking about people. That's not a mistake. It feels a little like the conversation about data has become all about empty fields resulting in zeroes and not about the people. Yes, empty fields/free texts fields are the spawn of satan. But.

That isn't where the stories are. Increasingly I am drawn to thinking about the people behind the numbers, the people we are supposed to be serving as data wranglers. Who are these people and what do they look like? UX design has personas - why don't we? Data visualisation is increasingly focused towards management information, and that's understandable, they are, after all, the ones making the decisions based on the data. But what if personas or some other way of visualisation the data still told management everything they needed to know, but still enabled them to keep sight of the people behind the data?

I don't have the answers. But I am doing the thinking and the questioning. I reckon that's a start.

Dear Sherlock,

Dear Sherlock,

Well, they say all good things come to an end. And so it is with you. I'm not prone to being a fangirl about anything really, as evidenced by my inability to fool my school friends that I really did think New Kids on the Block were gods gift to teenage girls. Or certainly not my idea of a gift. I wasn't interested in much though, to be fair, so nothing personal NKOTB. Anyway, never really been a fan in the true sense of the word. Until season 2 of Sherlock. Yeah, I admitted it, I kinda missed series 1 - I was too busy breaking myself in service to some deluded idea of that I could make a difference.

But series 2? We went back and watched series 1. Then we watched series 2 and Moriarty got me. But that wasn't the real reason I fell in love. Something a little more crucial happened between series 1 & 2 in my life - I started to suspect I had Aspergers. This resulted in some consternation, thanks to you lot, the comments about being a high-functioning sociopath leaving me a little confused as I watched someone half me and half not walking across the screen, leaving a trail of offended people in his wake.

Why half me and half not me?

Well at that point in my life, I certainly left a trail of offended people in my wake. Offended, hurt, confused, distanced...but, and I appreciate this is a massive cliche, I did and do a lot of things that a lot of other people can't or don't. I feel a lot of things others don't. I see a lot of things others don't. People had always told me I was smart but I just compared myself to all my geek friends around me and came off worse. I've felt stupid, actually, for a lot of my life, measuring myself on social intelligence, rather than acknowledging to myself that it's not normal to find so many things so easy.

So I watched you. I watched you saying the things out loud I would never. I watched you affecting those people around you. More importantly, I watched how others watched you from the outside - how the audience reacted to you. I expected hate and fear. All I could see was a slow understanding dawning on people that there are some people who just don't work the same way we do. Kids with 'high functioning sociopath' t-shirts. Filming locations mobbed. Careers made and others resurrected for an entirely new generation. It turned into a monster. I know none of you expected it to quite turn out like this and I know for some of you it has been a double edged sword, occasionally a right royal pain in the arse.

But I wanted to write this to help you understand how this show has helped me. As a friend and writing colleague told me straight to my face with no frippery or fluff - I'm somewhere at the end of a bell curve and which end is only a matter of how you choose to measure me. From watching Sherlock I have realised that I too have a sort of mind palace. That I close my eyes and I can recall almost anything I've seen instantly with complete accuracy that I have ever seen. That being able to close a book and put it down and reread what I've just read again in my head isn't normal. That meeting someone once and reading a few of their tweets and being able to provide them with a 5 minute breakdown of who they are and what they do in their spare time and who their friends are and what they do with them, isn't normal. On, and on and on and on.

And all because of you lot.

I am aware from visting the Sherlocked convention that that 'you' encompasses a lot of people, some of whom I met and all of whom responded to my explanations of how the show had helped me with kindness and gentle curiosity. Well okay, most. But the one who didn't, well I should have worked it out way before that that was the one person who absolutely did not want to talk about Aspergers. Because I've been diagnosed now. And because of a group of people who laboured and loved, grafted and had their patience sorely tested at times, I am proud to be so. I even use some of superpowers for good now - I work in a job where not only am I allowed and actually liked for being me, but I can use those superpowers to help other people who might have them but haven't realised what they are yet. Because we all have superpowers, actually. We all do. The capacity to love, unconditionally and without question is a superpower. It's not one I have. Or rather, love to me looks different, feels different, is experienced differently. But that doesn't mean my way is right or others wrong. It doesn't mean that I am envious of those who can love like that. It simply means that that is a superpower. A valued one.

What I know now is that mine are as valid. I like them. I have understood that I can use them. And it's all cos of you. Cos of seeing a bloke who had some superpowers grow up, gain friendships, become part of a gang, understand closeness, understand love, understand different love and what it might look like for him, understand that family can be more than blood, that friendships can look different as well, that you don't have to apologise for being different, don't have to apologise for breathing, that family are difficult but worth it, that smart might be the new sexy for particular kinds of people (and those might be the kind of people he might actually find sexy back!).

The same journey I have been on, in the same time frame as your show has been broadcast.

So thank you. I wanted to say thank you. I hope the thank you screams from the words above. I have spent 6 years wrapped in a world where I didn't know the ending all the time before it appeared. Where I was actually surprised by an ending of a show when it arrived. Where, yes, okay, the eye candy was quite lovely, but more than that, so much more than that.

So thank you. To the cast, the writers, the producers (Sue Vertue still remains the nicest person I've met thanks to this show - your signatures inside my little book of Sherlock stories will remain my most treasured possession for a very long time to come), the crew. Together you have come together to make something beautiful, something smart, and to one woman who used to be a girl, something life affirming and life changing.

Yours
Louise

P.s.
Benedict - When I blurted 'Hi, I'm aspie too'... it wasn't planned. It wasn't supposed to come out. I was terrified and intimidated and it just came out. I know you're not Sherlock. I'm not completely bonkers. What I meant to say was 'I'm aspie and your portrayal of Sherlock has changed my life, thank you'. When you turned to me and stared me straight in the eye and said 'Are you?' in a tone of voice I actually can recognise, what I wanted to say was this:
'Yes. I am. And because of you and your portrayal of a man, I am so so proud to be so'. After last nights episode, even more so. Redemption. It's a beautiful beautiful thing. I wont say only you could have played him so well, but we both know few could have played him so well. Thank you.

Gladiators don't always wear suits

Sometimes they wear jeans. And suits.

Scandal is one of my favourite TV series. It's the story of a fixer in the political hotbed of Washington during and after a Presidential election.  It's very good. You should watch it. The point of this is that the head fixer is a girl called Olivia. In the standout moment of the first season, the following conversation happens:

Harrison Wright: I’m a gladiator in a suit. Because that’s what you are when you work for Olivia -

Harrison: You’re a gladiator in a suit. Do you want to be a gladiator in a suit?

Quinn Perkins (nods head).

Harrison: You gotta say it.

Quinn Perkins: I want to be gladiator in a suit.

And Quinn proceeds to be a gladiator in a suit but also a gladiator in jeans. It's never expressly commented on in the series but nevertheless, that's what she is. Sometimes she gets a bit grubby and messy and assassin like. And sometimes she wears a suit. Why am I writing about this?

4 months or so ago I started a new job, It's a regional charity. So yes, I've gone from private sector to public sector to third sector. Some of you are sneering right now. More fool you.

Gladiators in suits.

 You see, the charity sector has had to change as much as the public sector and I suppose if it makes you feel more comfortable you can attribute the culture of the charity I work in to that change, It's not the reason but if you need some preconceptions challenging, then that's fine by me. I'm happy to be the lightning rod and cut you some slack. 

But gladiators in suits.

 We work predominantly with mental health - Improving Access to Psychological Therapies, CBT and counselling but also group work both underneath that banner and without. But it's not quite that simple.

On my first day, I wondered through the door of one of our offices and sat on the sofas in the waiting room. A well dressed lady sat opposite with a cup of coffee and her beautifully fluffy well behaved dog at her feet. She sat quietly drinking coffee, thanked the receptionist for it once she'd finished drinking and departed on her way to carry on her day. I later found out she was one of our ex clients who popped back, just for a coffee. Mental health check ups don't always involve therapy.

 I should at this point also say that we do mental health with a very focused gender approach. It means that at the moment, you are far more likely to hear a group of women's voices raised in singing or laughter, or the quiet murmur of women chatting within our centres. Perhaps because of this, the majority of my colleagues are women.  Yeah. I know.

Female gladiators in suits. And jeans.

But we don't just do that. We also have a criminal justice arm doing some of the most innovative, challenging work with offenders I've come across - and I've worked inside the London Probation Service on a pilot programme accepted at the time as being one of the most innovative projects ever launched. From shoplifters to women in cells, sex workers to organised crime involvement, we seem to excel at picking the hardest nuts to crack and using a cushion to do it instead of a hammer.

Now that's not to say enforcement (or indeed Probation) are not involved. They are. Strictly. But what we do and how we help is different from what Probation do. We think so far outside the cell these women either are in or are at risk of being in that sometimes I wonder why the entire country isn't approaching women at the risk the way we do.

 Do I sound proud?  Good. I am. I'm totally cool with that, Sound like I've drunk the kool aid?

Well maybe I have. I watch this bunch of women who are, in the majority, so self aware because they have been through counselling training themselves and so as a result have had to go through counselling themselves as it's now a requirement of training, wrangle some of the most difficult situations I can imagine. I listen to immaculate ladies with perfect make up, hair, handbags and heels tell me about taking women to hospital who have self harmed, gone to A & E, not been seen soon enough so left to attend one of our centre's self harm groups (Yes I know - but there's a strange logic there all the same, don't you think?) and been taken back to  A & E by this lady...I listen to another lady explain how a woman is struggling with her first ever relationship where violence has not reared its head, a massive huge gobsmacking break through for that woman, a breakthrough we have supported and helped her through, with no more acknowledgement that that is a phenomenal achievement, a magical thing, than to say the postman has been.

It's not that she does't care - she very evidently does. It's that this is her normal and so in becoming her normal, perhaps her superwoman cape has become invisible. This same woman meets with Police Commissioners, with all kinds of very important people and deals with them with the same confidence, elegance and presence that she brings to everything.

 But it's not just about the frontline staff. At our Staff Development Day we were asked to think about how we contributed to a person centred service. Back office staff including myself were very quiet. Then one of the frontline managers pointed something out - how do you deal with some of the most difficult, awful, challenging things you will ever hear, day in and day out? By being greeted with a smile, a joke, a laugh. By sitting through someone having a bit of a splurge about their son doing something silly, or their daughter going to university. By listening, without judgement and with empathy as those gladiators in suits (and jeans) continue to be gladiators. Their job would be much harder if they had to face lions in the back office too. But they don't, and the reason they don't is because perhaps we too are gladiators but in a different way. We are empathic too. Perhaps in some cases, overly so (raises hand) so we can't do what the frontline staff do. And maybe because we know this about ourselves, maybe we are slightly in awe of those who can, maybe we will happily spread glitter, fairy dust and cheer, if it means that indirectly we can help someone have the first non violent meaningful relationship they've ever had.

I think the charity sector contains some amazing stories. Of hope, of determination, of success in the face of such utter life chaos, troubled backgrounds and adversity that sometimes the words just blur a little. I think it's easy when you work inside the charity sector to lose sight, perhaps, of what you do, how amazing it is. How groundbreaking, how crucial, how phenomenal it is. I know some can't acknowledge that because to do so would not sit easy with them - I know of no one within our own organisation who blows their own trumpet.

And so it feels as if it falls to me. I am not a gladiator in a suit. Or jeans. But the day before I started my job I said I felt that finally I was on the side of the angels. Angels with dirty faces, that's as maybe, no one's damn well perfect. If the angels were they'd be useless anyway - how on earth does a perfect person gain the trust of someone who's seen things you can't even imagine? So I accept those imperfections without blinking whilst resolutely believing that if angels walk, they walk in the guise of gladiators in suits. Or jeans.

Bendable, poseable

So.

I have a new job. 6 weeks in and I haven't quit. You may raise an eyebrow but believe me it wasn't a foregone conclusion. I'm not going to lie about how hard it's been. The job is wonderful - and more about that at some future point in time because there's a queue of blog posts I've been too tired to write, about culture eating everything, work life balances, money not being everything, getting roped in to silliness, about walls coming down and being a happier, chirpier, sillier person who does a sort of nerdy spreadsheet and database orientated job - but this is about working with EDS and Aspergers.

Cos it's 4am and what else would I be doing ;0)

Oh yes, sleeping. Let's talk about that, shall we.

Both EDS and Aspergers come with a common symptom. A lack of proprioception. It means a lack of awareness of where limbs are in space and time. Well for me it does. I knock things over. I am clumsy. I trip up steps and downstairs. Until I knew it was an issue I fell down stairs at least once a year if not more. I've sprained each of my ankles more than 10 times in my life and had more X-rays of my ankles than I can actually remember now. I'm sure Accrington Victoria walk in centre know me by name. I walk into door jambs. There is a reason I ride a motorbike. There's an entire lane around me to be safe in. And somehow it's less of an issue. I've not overbalanced once on my bike in a year of riding - something my brain injuried mum also testifies to as a thing.

Anyway. I'm a bit flaily and all my physio has been dual centred - teaching me to be less flaily. This means conscious movement every second of every day. Before I stand up from a sitting position I have to think, right down to how I'm going to place my feet on the floor - or I'll dislocate bones in my feet. I have to think about how I walk, what my core is doing so my pelvis doesn't tip backwards and exacerbate my curved spine, where my knees are and are they going backwards...

You can't do that when you're asleep. You're off. Powered down. And that's kind of dangerous for us bendy people. We joke that at least we can't dislocate our boobs but it's not a joke - anything with a bone in it is at risk. I've sprained elbows, shoulders and ankles in bed. I've dislocated knees and fingers. I've woken with dead legs and arms or with hands stuck in a claw position.

And there is absolutely nothing I can do about any of this. I'm asleep.

Predictably, however, not for long. Dislocating things is painful. Not the kind of pain that bounces off happy. Not the kind of pain like a headache. Or even a migraine and I know, I've had a few of those too. And it's not that I can't deal with pain either - I've been walking around with heels 4 cm lower than my toes for years and just got on with it because I didn't know anything was wrong. I've ridden a pedal bike through a migraine. I've ridden 100km on my pedal bike and had to stop halfway through to have a cry because my back was spasming so badly. I am pig headed as hell and twice as stupid sometimes.

Dislocating joints hurts. I am embarrassed to admit that I have laid on our living room floor and screamed after dislocating my knee.

And then you start a new job. And you know that professionalism is crucial. Gaining respect and trust that you know exactly what you are doing is crucial. Being seen as someone who is strong and determined, who is disabled but relentlessly determined is crucial. Because you refuse to be seen as anything less. Because you have pride still, unbelievably, even when you've been reduced to a screaming crying wreck. Because you're human.

And you know that one day, inevitably, all these people are going to see the absolute worst of you. All your vulnerability and all your loss of control over the pain you try so hard to never let show. Because pride. Because people worse than you. Because professionalism.

Lack of sleep also makes the pain worse. Unfortunately. Pain bounces off happy. But a side effect of unstable joints that wobble all over the place because the ligaments are made of plasticine because faulty collagen is pain. So sleep is crucial to me. I have to sleep to be happy. To be resilient. To be able to put my face on, retain my dignity and not let it show. Hell, being happy makes me forget the pain is there, allows me to deal with it without even thinking about it. Happy is magic. Sleep is magic. Sleep is recovery.

So that's why one wrong move can land me in a & e. One wrong move can dislocate something so easily. And that's why sleep is crucial. And it's currently 4am and should be asleep because I want to go to an event I've been looking forward to for an entire year tomorrow (today).

But then. I have an amazing job with amazing people. My days are full of focus and concentration but also laughter and kindness. I have spare sometimes and whenever I do I give it to someone else. I don't mind - it helps me cope too, giving something out. I have self worth and self belief for the first time in years. I have so so much I didn't think I was ever going to have again.

So I guess the point of this is; if you hear me moaning about a lack of sleep, don't think I'm being dramatic or worrying too much or stressing. It's not stress. It's just a fact of life and one I'm okay with. But that doesn't stop me being apprehensive about knowing something will happen one day that will be embarrassing and pride denting and painful. I am human.

Paralympics

There is a cycle of acceptance for many things. Addiction. Depression. Grief. And disability.

The cycle, or circle is the same for all of them. Tediously so, at times, or so it feels. Everyone goes through it, everyone experiences it. Some faster than others. Some of us were born this way. Some of us acquired this way. This way is different by necessity, not by choice.

At times it can seem like choice has been removed. As though you will never have control again. You have to ask for help because nothing will happen if you don't. You have to be honest because nothing will happen if you don't. You can say goodbye to your pride, some of your friends, some of your aspirations and some of your ambitions.

Time passes.

You get help. The forces for good rally, slowly but surely. Some friends stay and some reappear. Some hobbies stay and some disappear. Sometimes it's unbearably hard and you don't know how you'll get through the day, never mind your life.

And then something changes. And there isn't a timeline on that. There isn't a judgement that anyone gets to make on that. Not unless you've been through it yourself. You'll be told that your pain is only worse because you're depressed. You'll be told to pull your socks up. You'll be told you're a downer and people don't want that negativity in their life. You'll believe those things. For a while.

And then one day you won't. One day, without noticing, you'll start to put the pieces back together again. Your life will be different. What you used to be able to achieve will be a distant memory. You I will find new aspirations, new ambitions, some new friends, a lot of new ways of doing things. You will take nothing for granted and no kindness will pass unmarked. The world will look different to you and it will be for the better.

You will find coping mechanisms. They will be many. You will find inspiration in the strangest of places, find yourself crying at the oddest of things. You will make decisions that before were incomprehensible, with a calmness and equanimity that you didn't know you possessed. You will find yourself, your true self, stripped as it is of ego, of expectations, of pride and irrelevance.

Some will find it in sport. Some will find it in new hobbies which become new jobs. Some will find new jobs that fit better. Some will find campaigning. Some will find writing. Some will find mentoring and supporting others through the long hard journey they've just clawed their way through.

Whatever it is, however it is, whoever it is, I believe that the Paralympics have their place in this. I believe that challenging peoples of views of ability and disability, of darkness and light, of assumptions and judgements can only be a good thing. The Paralympics are a brief interlude of acceptance and celebration that increasingly lead us to ask why?

Why do we have to have 'special' ad breaks?
Why are there no cameras at parasport events between those 4 year interludes?
Why is my television so bereft of role models in between those 4 years interludes?
Why do I have to be superhuman to be accepted, to be visible, to be worth something?
Why does everyone have to have a story?

In order for the increasing upward swerve of the Paralympics to have legacy, we must ask these questions. And we must answer them. Otherwise, a 4 yearly lip service becomes meaningless.

Hello {goodbye} world

It's 4am French time. I'm sat on a picnic table in a forest in Normandy. I couldn't sleep. Grammar isn't guaranteed. Ranting probably is, to be fair. 

The fundamental problem with a brexit, is this. 

We can't leave the Internet. 

A generation that didn't grow up with it voted to leave something you can't leave. I said a long long old time ago that the horse has bolted and you can't stuff it back unless it's dead. Brexit feels a little like trying to stuff that horse not only back into the stable, but asp trying to reanimate it. 

Zombie horses. Yup, there's an analogy. It's 4am. Well it is here. And so I'm allowed. And while we're talking about here, let's examine that. I'm sat writing this in a field in a forest, between two lakes on the edge of the Perche Forest in the Department of Sarthe in France. I take my ability to do so for granted, the same way I took my EHIC card for granted, our whizz through passport control for granted, the way I used an English bank card to pay the tolls at the beautifully designed toll machines for granted. 

I take a lot for granted, it seems. Stupid me. Like no one wanting zombie horses. Anyway. I'm on the Internet in a field in a forest. My keyboard can type é just as fast as it can type e. Perhaps that's a better example than zombie horses. But fundamentally the point is, I am connected. I can't disconnect. I don't want to. And to be honest, none of us under 55's want to. We're so used to knowing what we want when we want, we take it for granted. We are so used to fact checking and citation needed cries that we don't even think about it any more. We ask our friends on social media, we ask Parliament websites, we use open data, we do many many things to fact check. A lot of us don't even read newspapers any more - instead preferring to fact check ourselves, to try and find the truth of something without the unnecessary yet prevailing biases and agendas swarming all over our current media. 

We assumed the over 55's were doing the same. They weren't. They were busy in a disconnected world, where you don't end up working in the same place as a team of crack Polish devs. Or where the latest bright young brain in your industry has honoured your workplace with their presence despite being based by preference in Amsterdam. Where flying for a weekend break to Basel is no more deserving of comment than popping to the local beach for the day. 

They were busy voting to remain in a world which no long exists except in their imagination, coloured, blurred and distorted by rose tints, hindsight and the distance of decades. 

We took our connected world for granted. We took our access to knowledge at our fingertips, pretty much for free, for granted. And we paid a high price. But perhaps in some way, where technology or rather the lack of understanding of it (we will always be connected to the world now, in a far more fundamental and permanent way than we ever thought) has led us to this place, it can now lead us out? Perhaps we can now think about media and it's place in snap of national consciousness. Maybe we can think about how we spread citation needed. Maybe we can have a think about our responsibility as comfortable technologists with the world literally at our fingertips and how we use that privilege to educate and comfort. 

Just saying.