Rocking My Way Back Home- reflections on the Many Voices Conference

On Tuesday 2nd April I attended NAHT (National Association of Head Teachers)Girls and Autism Many Voices Conference in London. It was my first conference relating to autism just six weeks post diagnosis aged 56, in fact it was my first formal experience of being in a public place for a whole day since my devastating shut down two years ago .
Historically, in my capacity as social worker/lecturer in social work I had always found such events incredibly challenging; lots of people, unfamiliar places, noise, the sound of what I call ‘layered voices’, bright lights, smells of catering, stifling heat (my particular nemesis), the all consuming irritation with my own clothing, the need to fidget and move in order to regulate my thinking and to be able to engage with conversation, the overwhelming sensory challenges of not touching doors and handles and amidst all of that trying to present as friendly and personable. As I reflect back now it is no wonder that those experiences were absolutely exhausting and I would always leave with a sense of having failed in some way.
But, this time it was different, this time I walked in with trusted friends, my safe people and this time the emancipatory experience of having been diagnosed as autistic by it’s very nature enabled me to own the space, express my truth and to find that I was no longer existing within a self contained bubble of preservation but actively listening in an environment that although still enormously challenging was overridden by the presence of people who understood.
Life has been a battle ground of unimaginable, exhausting survival tactics that have bruised and sucked the life blood from my veins at times and throughout my career in social work it was not only traversing the most undulating landscape in order to keep myself employed and competent but also fighting for the rights and choices and dignity of others who were deemed as vulnerable and battling their own inequalities and trauma. I was firefighting with life in order to earn my living and to be of value.

On this day, the Many Voices conference felt different than all of those that had gone before. It was feisty, compelling, invigorating and enlightening. I listened to the passionate war cry of mothers who would lay down their lives for their children and in many ways already have. I heard the empathic voices of solidarity and commerardary of shared vision and collective responsibility and I broke my heart listening to the voices of young women whose recent pain resonated with the pain of an older sister who, forty years ago had experienced similar losses and indignities. I cried unashamedly for them and for myself. And, as I listened to those brave, strong, creative voices, something swelled inside of me and there was a call to battle, I felt my feet rising, my energy growing, my desire to speak out overflowing in the name of diversity and resilience, an overwhelming feeling of alignment.
How can this be? How can autistic young people in 2019 still be being ostracised, pilloried by peers and punished for their beautiful uniqueness in a society that boasts of anti discriminatory policies and practices that are simply rhetoric at ground level, wasted legislative change that we have fought for decades to see come to fruition halted by lack of commitment to enforce, respect and initiate. I was left wondering just how many hundreds of students that I have taught applied law to over ten years on university campuses are still fighting those battles, where I have desperately tried to engage people with the realities of inequality and ignorance of tokenism and platitudes that bare no authenticity if not lived from the inside. How many students are fighting for those truths on behalf of the people they are entrusted to serve now? We celebrate paper documents that are emblazoned with good practice intentions and yet daily, since joining in on the end of this vibrant, rallying community of amazing people, I hear stories of horrendous, disproportionate, inappropriate, unjust and ignorant punishment of children and families who are living a nightmare.
Three years ago my lovely mum passed away in my arms. Losing her signified the end of a ten year period of battling my way through bureaucracy, ageism and callous perspectives of people living with dementia. We won every battle but it almost cost me my life. I lost my best friend, my career and my hope and it has taken three years to recover. I didn’t think that I had another battle left in me until Tuesday, as I sat in my seat at this conference and embraced an overwhelming sense of belonging of value of relevance of currency and of purpose.
For those who say that being diagnosed as autistic in your late fifties is irrelevant and pointless, a waste of resources, I would like to offer another perspective. The day I was told was the day my life truly began, it was in fact the first day that I had woken without being in a war zone, I could breath, I could forgive myself and begin the journey of forgiving the ignorance of those who had historically, collectively incarcerated me in psychological chains for the whole of my childhood, adolescence, 20’s, 30’s, 40’s and 50’s. It’s not a call for sympathy here, in spite of those chains I gnawed through them and continued to live my life but always with a veneer of pretence and subservience to a neurotypical system that smiled on the outside and yet grimaced at my difference on the inside.
On Tuesday I sat amongst friends, I rocked and I stimmed and I was able to concentrate and absorb and engage and celebrate having rediscovered my purpose and instead of exhaustion there has been vigour and strength and a newness of spirit in the sudden realisation that I do actually have a battle left inside of me it is a battle to ensure that the younger people, the forgotten older people who are wonderfully and creatively made are successful in their (our) mission to experience the right to be able to dream to achieve and to co exist without the arrogance of rejection or diminished self esteem.
I am so deeply grateful to know that I am autistic but I can’t just sit back and get my knitting out, rocking my way into oblivion! Not whilst there is still work to be done in the name of equality.

6A26C275-95AD-4604-8B3B-E14511378600With love, Ju

Thinking in Riddles

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It was such a privilege to speak on the BBC Radio London Saturday Breakfast Show with my friends Carrie and David Grant alongside Francesca Happe, Neuroscientist  and Sarah-Jane Critchley, educator in autism. It’s surreal being around people who know about autism because as a newly diagnosed woman I’m like a sponge wanting to soak it all up, I know so little but have experienced so much. I’m sure as the theoretical knowledge develops so too will my self awareness and resulting strategies for living well with autism. Some folks have asked me for more information about my own journey to diagnosis since the show was aired so I thought I would do a blog page including some of the prep that I did for the show. Oh and by the way, before I went on the show I had rehearsed, researched and focused entirely upon that interview for at least 30 hours, practiced using a phone and counted repeatedly inside my head the number of areas I was going to chat about. Only then could I go full pelt into speaking mode. I’ve decided that if I am going to be a useful voice in the autism world then I have to be honest about the realities attached to that truth. Here goes………..hold on…….it’s like sailing on an open sea sometimes!

When did you first think that you might be autistic?

I can honestly say that I didn’t give it a thought, it was my wife Jayne who started to piece the jigsaw together. I had become really unwell after my mum died, I had cared for her for ten years with dementia and Parkinson’s. I had lost my career as a teaching fellow in social work and had been declared a missing person in London for a brief time. So, in effect, everything that I had held precious, that had given my life shape and purpose had been stripped away. I had always struggled with life since childhood and had been given a string of diagnoses over the years but I had just pushed through regardless surviving one crisis after another, overcompensating, working more hours, studying for more degrees, achieving higher, living off adrenalin and sheer will power, crashing, recovering and doing it all over again. Life was what I would now describe as ‘chaotically successful’ but when the wheel came off metaphorically speaking, I kind of crashed into a brick wall and a strange silence settled, it was during the recovery from that crisis that Jayne began to seriously consider the possibility of my being autistic.

Why? What were the things you related to that were autistic traits?

It was observations that Jayne had made over years of knowing me such as; a heightened sensory sensitivity. For example, I would describe the colour of a tree with such intricacy and detail that was beyond her experience, see ten shades of green where she saw only one. Or I would listen to a piece of music and express a depth of empathy or visual interpretation that was surpassing her own. Then she watched the Chris Packham documentary ‘Aspergers and Me’ and Chris was talking about the need for routine and having what he described as a ‘rigorously controlled environment’ to retreat to in order to cope with life. My own safe place had been altered beyond recognition when my mum got sick and we could experience up to thirty different carers in one month coming into our home at all different times of the day, that level of invasion of privacy had been devastating and one that had demolished the quiet sedate life that mum and I had lived prior to that. I can honestly say that if my wife hadn’t come along when she did with her beautiful, gentle spirit and devotion I dare not even begin to wonder what might have happened to us.

I used to think that everyone felt the same as me. That shopping in a supermarket was overwhelming for everybody because of the sounds of the freezers buzzing, the piped music playing, the hubbub of conversation, the rustling of people’s  clothing (especially rain coats in wet weather). I thought that everybody struggled with adjusting to the different smells, the fish counter, the meat, the flowers. Or got headaches from the beeping tills, squeaky floors and strip lighting, all leaving me utterly bewildered.

Jayne quietly continued to do her homework, not saying anything to me, mindful of the plethora of diagnoses I had had before, incase she was wrong. She looked at the Tania Marshall descriptors of how autism can be expressed in girls and she was astounded at how much of me she saw in them. For example; the need for isolation, history of misdiagnosis, struggles with social engagement, intense empathy, using different personas in public to ‘fit in’. This was the point when we had out first conversation about the possibility of my being autistic.

What was getting your diagnosis like for you? What does it mean to your view on life?

Getting my diagnosis was bitter sweet. I initially felt sad and regretful at having had to bamboozle my way through life trying to reconcile my difference with the world and twist myself into a shape that fit. I felt sad that I had spent a lot of my life in and out of psychiatric services, some of them less than ideal, some of them dreadful. And therefore, on top of already existing challenges had also gathered trauma and PTS along the way too. But, on the other hand I felt utterly liberated, as if my callamatous life could now be reinvented and the person I was always meant to be could come out. It was giving me permission to be the creative, quirky artist who had spent life trying to wear the right suit and talk the right talk.

I would be lying if I said that life hadn’t been without its pain but I like the old addage; ‘Sometimes you have to lose who you were to find out who you are’ and the things that we hide behind; careers, keeping stupidly busy, aren’t always healthy props to lean on and as I learned, can be lost within an instant anyway. My view on life has turned from grey to technicolour now because I no longer have to temper my imagination to try to be someone else. Two years ago I was reduced to a shell of a person, lost and blown away by grief but it is as if through that loss I have been left with the most beautiful gift. I have a second chance now to breathe in and out to the tune in my own head rather than to a cover version of somebody else’s song.

Do you wish that you had been diagnosed sooner?

If I could turn the clocks back to a time when I was driven through the gates of an adult psychiatric hospital as a child because there weren’t any services for children who couldn’t converse or who collected stones rather than played with their friends then yes! I would have lived a different life, followed different dreams and known that I wasn’t alone. But, I don’t regret surviving those experiences and feel that they have perhaps afforded me the capacity for a greater empathy. It formed the basis of why I went into social work and wanted to support older people considered as vulnerable and I don’t regret a day of that. Nevertheless, it was still an infringement of my right to know and to be myself in a world that was just so very alien.

I remember one professional once saying to me; “the trouble with you is that you need to learn to harness your imagination, get a grip on reality, stop thinking in riddles and start living your life like everyone else”. The reality is that in trying to live life like everyone else I never truly found out who I was meant to be.

Does it change the way you see yourself now?

Completely! I can look in a mirror now and doff my cap to the woman who has managed to survive 56 years as an undiagnosed autistic woman in a neurotypical world, a hostile world that gave me labels that were inaccurate and stigmatising and as a result I have lived my life feeling ashamed and tarnished by those flippant profiles. Now it is like knowing my eyes are brown or my feet are size eight, knowing I am autistic has given me permission to paint from an open pallet now rather than painting by numbers.

Why do you think that women aren’t being diagnosed earlier?

Its too easy to offer up alternatives, to see the symptoms of autistic women struggling with stress, loss, exhaustion, depression and to put a plaster on those rather than to explore the catalyst for those struggles in the first place. Trying to live well in a world that batters you with sensory challenges will inevitably result in behaviours and presentations that are complex. Too often the therapeutic responses to those complexities are; “How do we control this?” rather than “What is the root cause of this?” It’s far too easy to fit people’s presenting needs into an existing prescriptive box than to step out on a limb and challenge the status quo. I spent twenty years in social work, half of that in higher education, autism wasn’t a priority, if there at all! It was tagged on to a module on mental health or learning disability. I have to ask myself now, was that sufficiently preparing potential practitioners for life working alongside vulnerable people in crisis?

Women are expected to cope so we buckle down and get on with it and it isn’t until crisis comes that alarm bells start ringing and even then, it depends on who is listening when they do as to whether or not women are afforded the right to assessment. I was fortunate to have a very supportive GP who listened and acted upon our thoughts. Surely a great deal of trauma, time, money and resources could be saved if autism was considered as a matter of course rather than patients having to self diagnose and as in our case, self fund our assessment. I was a typical revolving door patient and I’m just left wondering if that might have been different.

What would you like the public to know about the way autism presents in you?

I am newly diagnosed and am learning something new each day about who I am. What I can say is that life is exhausting at times. I have endless rehearsals before attending any social event and overwhelming anxiety in new places, crowds, public transport, shops, toilets, passing bins, walking past rubbish in the street but on the other hand I can look at a leaf and see the digestive system of the bug that feeds off of it!

I am reliable to a fault. If I’m entrusted to do something I’ll do it thoroughly and with devotion but that will become the only thing that I can consentrate upon until it’s done but it’ll be done well.

I can walk onto a stage to speak in public or to perform a piece of music and I feel at home and free but I need help from someone I trust to get me there, help me to become accustomed to the environment and show me where the toilet is! Someone to be present, someone that will understand my need to pace up and down and to incessantly count the right angles and contours of my surroundings.

I find social chit chat excruciatingly painful and awkward, I can’t appreciate it’s value or its purpose and it ties me in knots. On the other hand I have a strange filter and I’ll tell you you look tired before I ask you your name! In a conversation I shall remember every detail and be really interested to find out more and to visualise the stories you share with me. If you tell me about a place I might spend a week or two after we have met learning everything there is to learn about it. I don’t want to go there, I just get hooked onto things that can hold my interest for long periods of time.

I need periods of reclusivity but enjoy company, although I won’t always be able to engage actively with conversation in groups, because I am quiet, it doesn’t mean I’m not interested, I’m absorbing what you say but needing to process its content by looking at the floor or fiddling with my buttons.

I struggle with irony but love slapstick. If somebody teases me I will take that to heart but if I see something visually funny I will laugh until my belly aches, possibly for days!

I can spend twenty hours being absorbed in an activity such as painting or researching a topic of interest forgetting to eat, drink, sleep, go to the toilet and yet be completely floored by an unexpected knock at the door that renders me curled up behind the sofa shouting “I can’t do it”.

I can pull at my hair and punch my own face at the constant sound of a dripping tap but equally, in contrast, can recover and spend several hours quietly fixing it and not give up until it’s done.

I can read the atmosphere in a room, that can be a curse or a blessing depending upon where I am !! But as someone who hates conflict, that will inevitably lead to me vacating a place where discord is present or retreating inside of myself to stay safe.

I say sorry a lot, even when I haven’t done anything to be sorry about!

I have endless patience with other people’s pain to the extent of physically feeling it. But if I’m asked to do something without having had the chance to prepare I can feel such distress that is, at the time, terrifying and immobilising.

I recently had the term ‘Intolerance of uncertainty’ explained to me. This is being overwhelmed by the potential for stress. On the other hand, if amongst close friends who I feel safe with there can be all manner of distractions and sensory things going on, kids playing, dogs barking, music blaring and I am the happiest I can be because it’s not unpredictable and there is a strange security within that.

I can smell the colour blue and I can hear the dust in my house. The sound of the motorway, a few miles from my house can sometimes override my capacity to hear your voice sitting next to me.

I am constantly counting the space around my feet, the things in my pocket, my bag, my surroundings and whilst doing that my hands are reflecting that counting. I will be doing this as I watch tv, listen to music, read a book. The only time I have respite from this is whilst sleeping or playing music.

What of the future?

These are interesting times. The term ‘late diagnosis’ is one which fills me with hope and peace and self reconciliation. I am so fortunate to know now and have opportunity to grow and to embrace a three dimensional life. I’ve stopped trying to punish myself for being different and started to embrace that difference. New tribe, new breath, new experiences, new opportunities. I’m thankful, very thankful.

With love,Ju x

 

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In the Name of ‘Normal’ (the story of a broken fence)

IMG_7802It is this time of year when the memories of being broken come flooding back and respectfully I acknowledge them and can now gently embrace them as valuable jewels in my life. In a few weeks time it will be three years since my mum died, two years since I went missing, since walking to London for Missing People, a year since going into reclusive mode and starting to write my book, a year since being unable to walk, two months since foot surgery and a two weeks since receiving a formal diagnosis of autism.

How life can change in an instant. If you had met me several years ago I would have presented to you as a completely different person. My job title was Teaching Fellow at a very well respected University. I had a beautiful room in the Social Science and Public Policy Department and taught students who were studying for a career in social work both MA and BA and post qualified practitioners who were studying for a higher professional qualification. I was a member of the Higher Education Academy, I loved applied law and safeguarding practices and grabbed every opportunity for teaching them. It hadn’t been an easy journey and I would on occasion sit in my room, looking out over the leafy campus and wonder how on earth I had managed to achieve that status, prior to that I had worked as a Senior Lecturer in a city University that buzzed with energy and vibrancy and adrenalin.

I had left school in the back of an ambulance with no qualifications, I had spent the majority of my teenage years in and out of adult psychiatric care because children’s services were non existent and I had been told that it was unlikely that I would ever make my twenty first birthday. It had been a tough often devastating adolescence and I had witnessed things that no child should have been privy to, experienced abuses inside the walls of places that should have been protecting me. It had been a journey that had taken me to so many different places, I was a cleaner in a faith community in Wales, I worked in a glue factory, I became an arts graduate, a painter, musician, church going kid who was asked to leave for coming out as gay. I was often in a whirlpool of crisis, propping myself up with untold dangers, burying friends who left this earth too soon. My dad died when I was in my late twenties and it was that pivotal moment that changed me, made me apply myself with such force to prove my worth, to achieving more than others had long expected. I left my beloved arts and began to study. After years of practicing within a profession that I loved, I was given the privileged position of teaching at a level that was far beyond what I had ever dreamed possible. I was the kid who needed social workers and I had some mighty fine ones and some really terrible ones but I never thought it possible that one day I should spend my days in a lecture theatre encouraging and building others in the pursuit of their dreams or in tutorials listening to the doubts and challenges of mature students sacrificing everything to return to education.

Just as many women work and juggle family life and other demands, I was a carer too. My life was embedded within academia and looking after my mum who had dementia and Parkinson’s disease. Life was rich and full and busy and funny and challenging and all was well in our household. I enjoyed a generous salary and quality of life and pushed through each day until I eventually began to unravel. One of my biggest challenges was trying to manage the ideology and good practice that was embedded into my psyche alongside the ‘mish mash’ pothole of an experience that community care provided us with at home. It was a diverse and complex melting pot of excellence and horror, of wonderful kindness and ugly, judgemental otherness. It was at times simply heartbreaking and we fought and won many battles that cost us greatly. By now I was delivering a lecture in the morning and then lying, curled up on the floor of my university room, holding my head and trying to find some energy to engage with life for the afternoon, giving out and giving out to others, being the class clown and forgetting to top up myself again.

It has been a very cathartic time, writing my book and it is nearing completion now. Because for me there is no other way of making sense of what happens to us without the tools of writing and music and painting. I don’t know why I was afforded the grace of being found in London and when I think back now to that solitary figure, sat on a bench, tired, hungry, hearing the drone of the London traffic, clutching my mum’s lilac cardigan, I feel only sadness. When I think back to sitting in a doorway with a well dressed woman shoving the door into my back as she opened it to tell me to clear off because ‘decent people use this place’ and I couldn’t even look her in the eye when I whispered the word “sorry” and walked away. I had walked so far that when I was found the soles of my shoes literally fell off, the rubber casings disintegrated on the bathroom floor and I stepped out of them as if symbolically levitating away from the symbols of pain. That Achilles heel has stayed with me since as a close reminder of that pilgrimage, it was the last frontier, operated on in December. As a missing person I had never hurt so much in my entire life. I had never cried so many tears, felt such aloneness, had so little desire for anything. I couldn’t even read a line in a book let alone write articles, exam papers, law lectures. I was faceless, like the child sitting in a psychiatric ward wanting my mum.

“In my dreams, I see your face, walk with you, hold you safe. I close my eyes, I think of you, until the day I see you again”….I swear to God that every time I hear those words of The Missing People Choir I am right back there in that doorway, rocking and wishing that I could trust someone to help me and yet being so paranoid that I was in terrible trouble for having left in the first place. How could I ever not reach out my hands to the Missing People charity when they did just that for me? I will be forever indebted to their generosity and to the kindness of Amanda Holden who helped me stop running.

Time does heal. It has taken three years to recover but it does heal. And, as I embrace the slow rehab of walking again and rebuilding the wasted muscle from not using my leg, it has a strange correlation, you can’t run before you can walk. Rebuilding emotionally has been equally as important, learning to strengthen emotions, harness good, healthy self care, utilise the help and support of dear friends and loved ones. It has been three years since I have worked, engaged with society on a consistent level but it’s been a crucial time for recovery, one that has ensured that recovery is permanent and protected. I am no doubt stronger than I have ever been, more resilient, more self aware, more eager to engage with life in its truest sense. I may not have any money but I am rich.

Two weeks ago, I was fortunate to be able to spend time at a specialist centre for autism in Kent where, over recent months, the records and reports and history and trauma of life and all of the calamitous experiences had been gently and carefully and respectfully teased out, explored and acknowledged. And finally, aged 56 years old I was told formally that I am and always have been autistic. Within that moment I heard every slamming door in every hospital ward, every screaming echo in corridors of silence, every negative, misdiagnosed, sedated year of stigma and lost youth and my life made sense. I was referred to as resilient, strong, positive, creative, unique and a survivor and I cannot find words that fully express how liberating and endorsing that is. I only wish my dear parents were here to know that I was always meant to be different.

We couldn’t have done this without the love and support of our friends. I want to publicly thank Carrie and David Grant for holding us, guiding us and welcoming us into their tribe. Through those dark Missing days, before and after, they have simply loved us and now they continue to help us to understand what autism means and the beauty of its revelation.

This week, myself and my wife Jayne went back to the grounds of the old hospital and although in the main it no longer stands, amongst the new, luxury apartments built from the old asylum ruins are the same trees, the odd brick and a section of old railings that used to form the perimeter fence around the hospital. As a child patient I was required to dress in over sized overalls, on a busy main road and paint those railings in the name of Occupational Therapy. We were called ‘nutters’ and other words that I would never choose to repeat and we had rotten fruit thrown at us from neighbouring houses. I found those remaining fences, hidden under years of growth and debris and almost forty years to the day I could still see the layer of paint that had been mine. I’m not afraid of nor owned by those memories any more. I have a brick from the old hospital on my window sill, pine cones from an old tree in my fireplace and a photograph of my railings to remind me that no matter how lost we feel, how misunderstood we become, underneath all of the veneer our true identity holds fast to the hope of one day being allowed to show itself and to be free. I shall always remember the people I counted as my friends who never had the luxury of feeling that freedom.

My name is Ju and I am autistic and I shall spend the rest of my creative, quirky, ‘dance as if no one is watching’ gift of a life embracing just that.

To everyone who has been part of my story, thank you.

With love,

Ju

A Christmas Reflection on The Missing People Choir and Charity

On Monday evening my wife and I had the privilege of attending the Missing People Carol Service at St Martin-in-the-Fields, Trafalgar Square, London hosted by Sir Trevor McDonald OBE. Less than 5 minutes from where I was found in the Spring of 2017, transferred from a police car into a police van with wire mesh windows and taken to Charing Cross Police Station and later escorted to a psychiatric hospital under a section of mental health law that I had spent the last eight years of my career teaching to qualifying and post qualifying practitioners as a university lecturer in social work. I felt nothing and remember only the bright hospital lights, the kindness of the police, the interrogations of staff, the toilet filthy and filled to overflowing with paper that sat in the middle of a room with observation windows and no privacy. I felt utterly bemused at being asked to sign a blank section document and when I refused on the basis that it had absolutely no information written on it was advised that they would “fill it in later, after you have signed it”. I knew it was illegal and was trying to hold on to my sense of self whilst trying desperately to fight my way verbally out of a situation that threatened my freedom and my need for solitude and peace and safety. From somewhere inside of me the rhetoric of policy and practice that had inspired and driven my career, that sense of injustice, that anger at misrepresentation and stereotypical perspectives on mental health crisis were now the only defences I had left. I knew all of the right things to say and do to ensure that I got discharged and every last bit of energy achieved that because it was an environment that was threatening, frightening and disempowering. I was released late into the night with no coat, no glasses, no money, no idea of where in London I was, miles from the familiar territory I had taken solace in, my only crime being the devastation of my mums death and the realisation that I was a missing person. My wife was 200 miles away. I had to borrow a phone, ring her so that she could locate where I was on google maps, book and pay for a taxi to come and find me and arrange somewhere for me to stay until she could make the journey to reunite us the following day having herself endured days of police scrutiny including the searching of our home. When we were reunited we spent two days hidden together in a hotel room crying away ten years of caring for my beautiful mum whose own spirit of fun and vibrancy had too been stolen by the tortuous spirit of dementia. My heart was broken, bereaved, lost and unable to care for or think for myself. I had felt like a frightened child as if standing in the middle of a busy road, traffic speeding passed, invisible, vulnerable and alone.

The poignancy of that parallel world is almost beyond literary description as I sat listening to The Missing People Choir in this beautiful church on Monday evening singing the very same song that had spoken to my brokenness whilst I sat alone in Hyde Park all of those months ago, the catalyst for my asking for help as a man cleaning the park had stopped with his trolley to ask me if I was “waiting for a friend”. It is a song that quite literally touches my soul as I dare to consider where I might have been had I not been so comforted and reassured by it in my darkest of days. And I have such a mixed bag of feelings, feelings that range from guilt at seeing the pain and hearing the stories of devastated families of missing people, feeling as if I am in some way representative of their pain and distress and yet on the other hand deeply attached to those individuals who sing their hearts out in support of their missing loved ones. These are people who have found a strength and an energy collectively that unites and empowers and comforts them and yet each time I hear their voices I too feel comforted and reassured and bonded to a community that is devoted to searching, keeping hope, believing for change.

It is a strange, beautiful and extraordinarily precious thing to have been brought into this family of people and to sit alongside them in remembrance and resilience and solidarity. I have a sense of pride and humility, thankfulness, commitment and love for this charity because when traditional services failed me they quietly and unassumingly reached out their hands and reeled myself and my loved one in…and there they have stayed throughout the whole healing process providing back up, specialist counselling, the promise of a voice on the end of the telephone 24/7 and now, friendship, friendships that are developing as the months roll on, connections that are initiated through loss and endorsed through a shared sense of belonging and survival.

Yesterday we spent time revisiting those places where I had been lost and there are still lost people living there amongst the chaos where night meets the day in the cold and harsh realisation that today will be the same as yesterday, each with their own stories of loss and sadness. As long as I live I shall remember the individuals who I met and wonder if they too were rescued. We revisited places that had shown kindness and took boxes of ‘Heroes’ chocolates to say thank you. We stopped at the doorway where I was told to move one because “decent people use this place” an embassy office! And we cursed the cruelty of ignorance and selfishness and hoped for more kindness and empathy and humanity and grace.

So, on Monday evening we were shoulder to shoulder with those who have been lost and those who still search for the missing and we lit candles and prayed and sang and breathed the same air because we care about each other and that, in a world of such division and negativity is a gift worth cherishing.

Sending my love to all those who have missing loved ones, to those who support and care for those affected by ‘missing’ and to those who are not with the people they love this Christmas. You are thought about and not forgotten and may the breath that we share and the air that we breathe carry you safely home.

With Love, Ju xx

The Storms that Follow us

Its World Mental Health Day 2018, a poignant title for an all encompassing lived experience for many.  I would usually perhaps share a quote or a photo or make a comment about the importance of awareness but as the years change so am I changing and it feels right this year to be a little more open and to own what mental health struggle has meant for me personally all of my life. The climate is changing, people are becoming accustomed to reading about, sharing and owning their stories and I have spent the past eight months writing my own. But something struck me recently, something that was difficult to swallow, a revelation moment. The realisation that despite my own commitment to promoting change I have personally carried a burden of shame for my own story . I could hold up the metaphorical banners, stand on the virtual soap box even teach the applied law that linked to good practice, but I still held my own personal story in a box with a very tight lid on it, wrapped in a chain and locked from the inside. Why? Because I feared rejection, stigma, misinterpretation and a loss of control. It is only through writing that I have become enabled to open that box, hold my own pain in my hand, open it, look at it, own it and gently blow on it and watch it take flight. Those of you who have read my blog since it’s beginning will know that it started as a result of my going missing after losing my mum to dementia having been her primary carer for ten years. During that time I had become broken and diminished and all of the things that I had used to survive with had been taken away; a career as teaching fellow in social work; the security of work; the privacy of home; the identity as daughter and carer, my free spirited self as a musician, painter and writer, all gone in the passing of my mum. The day that I awoke and left my home I had no idea of who I was anymore. It has taken a very long time to reach a point of recovery that enables me to now share that experience, simply as one human being reaching out to others who feel the darkness too.

When  I was growing up, people with autistic traits like me were the ‘odd’ ones, we felt more deeply, hurt more easily, reacted more abstractly, saw the world through a prism of light and shade and sound and emotion that rendered us vulnerable to change and often misunderstood for our compelling need for transparency. We were  hidden away during times of crisis, smoothed over by regimes of ignorance, quietened by medication and labelled inaccurately. Those labels may have been transient words written on a page to those who chose them but to people like myself they were the defining elements of our futures. Some of us wriggled ourselves free momentarily, some of us became enmeshed in them like the beautiful sea creatures we see today, choking on the plastic debris casually disguarded by others. We were therefore not only living with the suffocation of sensory overload but also now weighted down by the negative anchors of poorly chosen words that became enshrined in our history well after the people who wrote them had gone.

Today is the day that I am going to stand on the very tips of my toes and say the words out loud to the world that I am a survivor of those very systems. I was a child who was misunderstood, I sat alone on squeaky chairs too big for my little frame  hidden away in a large psychiatric hospital for being different, for feeling too much, for caring too deeply for not being able to engage with expected routines and prescribed stages of education and social interaction.  In the 1970’s, if you were different you were treated as different and different in those times meant being placed on a production line of theoretical principles that would endeavour to twist, manipulate and remould you into a shape that would, if packaged correctly, fit you neatly back into the community you had left without them even noticing that you had gone. Have you ever tried cutting a perfect circle out of a piece of paper and the more you cut the more the shape you are aiming for is dimished until you’re left with a spiral of cascading, bouncing, dancing spheres that own their own space and move where the wind blows. It’s a little like that, the more we try to force a leaf to stop rolling in the autumn breeze the less likely we are to ever catch the essence of why it moves. We have need to catch it, stop it, stamp on it to make it stop when it was made to blow in the wind and to celebrate its colour and form and beauty and uniqueness.

Today it is Mental Health Day. Today parents are still battling for their young ones to be able to roll in the breeze as their authentic selves without fear of stigma, redress of ridicule. Today people are still fighting for the rights to services and treatment and understanding and educational systems that celebrate difference and capture the anticipation of what that creative difference can do to change our world view. Today there is a vaneer of progress that offers up hope of change but it is an ongoing battle of wits between bureaucracy, resources and enlightened practice. Today is a day for acknowledging that we still have a long way to go before we make it right for people who are misunderstood.

Many of us spend our lives using energy that is beyond human understanding in order to mask our real world experience and to cut it into the perfect circle that gives us a chance of acceptance, livelihood, relationship and community. But for many that isn’t sustainable, there will come a time when the energy runs out and the mask drops off and we are left dangling our legs from an oversized chair feeling bewildered and overwhelmed by a society that tells us if we’re not running with the pack the wolves will eat us.

Today I am standing with those who don’t run with the pack. Those whose feet have other paths to tread, those who relate to people from a circular perspective and yet feel as if cornered in a square. I am with you, I am for you, I am one of you.

The Dark has a Friendly Face

By Ju Blencowe 

Published by Jessica Kingsley, Spirituality, Values and Mental Health, Jewels for the Journey 2007

The dark has a friendly face

where each shadow knows its own place

And it sways to the pace of the night

As it rocks it’s way back into light

It will cover and shelter and hide

All the things that we covet inside

And it stills all the storms of the deep

As the world and it’s people all sleep

 

The dark has a friendly face

When nobody knows where you are

And the sky is as black as my soul

And the whistling breeze reminds me I’m here

And alive and in control

 

The dark has a friendly face

As it dwindles it’s way into dawn

And it tucks itself neatly away

Til the dusk and the evening are born

 

The dark has a friendly face

And it sits up all night like a friend

And it ticks and it tocks into day

When the lull in the chaos will end

 

With love, Ju xBF3B257C-C2C6-49AF-B617-44457C7B9732

 

 

 

 

 

 

 

 

A message to new social work undergraduates

It’s just a month since we told our story on Songs of Praise having been invited by BBC via Missing People and I have purposely stayed away from social media since then as an act of self preservation. It was a really tough decision to render myself quite vulnerable but equally validating to have been given a voice to simply walk people through a series of events in my life that can touch any one of us at any time, there is no such thing as an ‘invulnerable person’. It was also special to be able to see my mum on her favourite programme, she would have been very proud of that. Telling my story publically and being able to thank the Missing People choir and the people who helped me to get home was the main reason for doing so, it’s important to say thank you and to acknowledge others who, behind the scenes, help to pick up the pieces for those of us who have lost our way for one reason or another.

This used to be the busiest time of the year for me as a lecturer on undergraduate, masters and post graduate social work programmes. As undergraduate lead it was a time for gathering up the new cohort of freshers and nurturing them through their first weeks of university life, many overseas students missing home, some mature students juggling families and work, all anticipating their newly chosen career in socially work. It really was such a privilege to be there and to be part of that process, particularly within the applied law for practice arena that I specialised in and in the pastoral role outside of the classroom.

As I think about those students who will this year be preparing for their new career, I wanted to offer some words of encouragement and guidance if I may and to wish you well with your studies. I hope that your experiences of the courses you have chosen are as rich and diverse and satisfying as my own experience of sharing it with so many was for me.

. Always try to remember that no matter how challenged you feel by the course requirements, content and demands, you are needed within your chosen profession and the contribution that you make to your studies will reflect the impact you will have on your practice

. Be kind to yourself. You will feel bombarded with so much information and some very disturbing and harsh realities. Take time for quiet reflection and relaxation because these are good skills to learn before becoming a practitioner. Absorbing the pain of others can batter your own energy if you allow it to and then your affectivenesss for others will suffer

. Pace yourself in the first semester, building up momentum with your reading and research. A steady pace is kinder than a laid back beginning and a frantic rush before submissions dates

. Find your passion. If the subject areas that you are introduced to don’t put a fire in your belly and leave you with a thirst for more self directed study then question wether or not you have chosen the right course. If you can’t find an energy for the material you are studying then you won’t find it with the people you support, an informed worker is an engaged one, you can make a difference in the lives of vulnerable people but it’s not for everyone and it’s ok to say so

. Make good use of your tutors and support networks within the university, they are there for you and they exist for you, don’t be afraid to approach people for guidance and inspiration.

. Look after each other. The people sat beside you as strangers in week one will become friends for life if you nurture that friendship, the essence of good practice is team work, having your colleagues back. Learn to be a team early on, it will change your studying experience and create a brilliant environment for learning and teaching.

Finally, enjoy your journey into one of the most interesting, challenging and fulfilling careers on offer, a profession often villified and misunderstood, remember that the media don’t get to see the good work that sustains and enables and fights for change, the satisfaction comes from within, knowing that at the end of an exhausting day you changed something for somebody, even if it’s simply by being the kindness in a persons day or the advocate during a persons crisis.

Enjoy

Ju x

 

‘Found’ Dedicated to ‘The Missing People Choir’ – The Song that Sang me Home x

It was humbling being asked to tell my missing story on Songs of Praise and to have such a painful time in our lives treated so gently and with such dignity by those who filmed and created the piece, yet another example of the kindness of strangers. We hope that it will help others in some way just as in telling it we have been able to take another step toward recovering from it ourselves. Each time we return to this painful episode in our lives we are reminded that unlike us, so many still have missing loved ones or are missing themselves and that will always be at the forefront of our minds, everyday somebodies worst nightmare is realised may we always remember that.

We hold very strongly to the notion that you can’t be a missing person unless somebody misses you and the concept of  ‘missing’ for me personally was such a shocking one, I was too ill at the time of my breakdown to consider my own status and during that mental health crisis I had no understanding that I myself was considered to be a missing person. You see, I didn’t ‘go missing‘, I was already missing. Being a missing person was a status given to me in my absence by concerned others, the church cafe where I was given a drink, the police searching my home, those in authority, my friends. That is why the Missing People Choir played such a key part in my own return because on that day when I had received a text message from the missing people bureaux telling me that I needed to let them know that I was safe, the realisation that I was considered a missing person was an immobilising one, I went from being unconsciously lost to being consciously terrified of being found, thats when the grief turned to trauma, it was a dangerous time, running scared. The only safe source of reference in my distressed state was the choir and as I sat in the park that evening reading a text that in effect informed me that I was a missing person I knew that I wasn’t alone despite the paranoia at the realisation that I was not only battling with my own mortality but now also being actively searched for.

Music connected me with the present in a way that nothing or nobody else could, I had given up a musical career when my dad died because I needed to look after my mum it was the one thing that could always cut through, the thing that had been a constant friend throughout my complex life, throughout mine and my mums lives together, music shared by people who knew pain and yet sang through it with a depth and a resilience that gave me hope. I trusted no-one and yet felt in the pit of my stomach that I wasn’t alone.

It would be an understatement to say that such a short period of time has been life changing as it wasn’t until everything that had once defined me had gone that I was afforded the opportunity of starting all over again, literally one day at a time, reinventing myself. The tiny steps have been tangible, invaluable and strangely comforting, some have been far too abrasive and sore but all have played their part in recovery, teaching me what is really important in life. This last year has been a million miles from the crazily busy world of my past for in so far as I have often spoken of the kindness of others, the biggest lesson has been learning to be kind to myself and to embrace each day with a pragmatism that ushers in the present and respectfully accepts the past.

Walking to London was physically exhausting and yet emotionally liberating and after a year recovering from the foot injury acquired along the way I’m fortunate to be having surgery soon that will mean I can return to exercise, an essential pre- requisite for good mental health. Writing has been a great way of reflecting and as it has continued, a blog has now become a manuscript and through it an autobiographical novel has evolved. I have no idea whether or not anyone will want to publish it but in some respects that doesn’t really matter because life isn’t about achievement anymore, its about reverence and breath and the privilege of having been able to love and be loved even when at times that love has been cripplingly heartbreaking.

I don’t know what life holds for me now. I have spent the majority of the last year quietly at home venturing out only when absolutely necessary, thankful for life and quietly being family to my wonderful partner and our beloved animals and a friend to those precious people we have in our lives who know us well, we value our friendships as indeed we also value those who have helped us along the way both professionally and personally. Our joint prayer now is that we in turn might be able to be a bridge and offer a helping hand to someone else who may be sat in a doorway somewhere either virtual or actual being told to move on because “decent people use this place”. We are all ‘decent’ people, some of us have got lost and those who are still lost need nothing less than kindness, empathy and love to get them home.

This song was written with love to The Missing People Choir

Ever thankful , Ju xx

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