A Message from Carrie and David Grant

fullsizeoutput_1304“Ju is an outstanding and inspirational human being. There are so many threads to her life and many “difficult to hear” stories. One wonders if her autism diagnosis had come sooner would things have been different for Ju? Ju has a way with words that hit hard and have real poignancy, she is an artist at heart and her view of the world is quite amazing. She is also a truth-seeker and is able to reflect on her life experiences and still bring hope”. 

by Carrie and David Grant

International Women’s Day 2020- The Colour Blue (for autistic women who never knew)

BF3B257C-C2C6-49AF-B617-44457C7B9732

I can’t remember a time when I didn’t concern myself with the infinity of space or the concept of eternity, these are elements of life that have travelled with me through time, since I was born. Neither can I recall a moment in my life when I haven’t been overwhelmed by the suffering of others or crippled with inertia at cruelty toward animals, or when I haven’t wondered about wars and treachery and conspiracy and corruption. Nor is there a time in my childhood when the wilting of a picked flower or a snapped twig from a tree or a random pebble found in my shoe wasn’t mourned for, worried about and set aside with gentle care as if burying a friend.

I remember the liberation at feeling breeze on my face and the taste of the salty sea air; spending my pocket money on the discarded torn, one eyed stuffed creatures thrown into bargain bins in charity shops that smelt of musty coats and lavender, delighting in the birdsong of the robin and the lark and lying down in the grass with a cabbage leaf over my face to see what a caterpillars world looked like. I felt a joy beyond human words at touching the colour of the sky that was blue and clear with streaks of white and the joy of burying my face into the tiny body of a purring kitten whose heart raced like the treadle of mums sewing machine, a tiny creature who understood my world and chose to dwell inside it with me. And, if I close my eyes, I can still see the intricate patterns on dresses worn by ageing aunts, their texture, design and contours and when I see those patterns now I smell the coal fire again and hear the sparks crackling. I remember hiding under the table at social events, talking through my teddy, running away from people in spectacles, wishing I could take flight like the birds and soar above the noise of incessant conversation, smoky pubs and people who told jokes that I didn’t find funny, people who laughed at my awkward gait and big feet and confidently told my parents that one day I would ‘get over’ my shyness.

I remember coming home from school and looking for my beloved cat who always met me in the street and finding out that he had been poorly, taken to the vets and put to sleep, my best friend, gone in a whisper without me being there to hold him, to say goodbye, and I gasped for air as if my world had ended, looking for his fur on the chair where he had sat that morning, collecting it in a jar and carrying it in my pocket. And years later, I would carry the ashes of my beautiful border collie to work in my rucksack, reassured that the one who had known me best was there beside me and I was looking after her just as she had always looked after me.

And then, as the years moved on, those memories of solitude and peacefulness and innocence of sensory delights were gone, overtaken by the rain clouds of winter and the ignorance of life, destabilised by adolescence and the expectation of ‘maturity’ and those anxieties from fallen petals were a distant thing as life crashed and banged and walloped its way into my psyche like a charabanc of frantic people skidding off course, bumping and bruising and smashing it’s way through pathways strewn with broken glass and noxious debris. Noises got louder, voices raised, the faces of strangers became contorted and hung like gargoyles on fence posts and garden gates and even a walk outside was devoid of its joy and beauty.I remember the etched lines of judgement, the morally superior and the effortlessly sublime all wrapped up in teenage angst and mystery. Listening to peers, comfortably linking arms and talking excitedly about their favourite bands, their romantic conquests, mirroring their focus, their expressive, vibrant eyes and their energy for each other as I snook away to listen to obscure pieces of music that made me weep and see the colour of orphans eyes, in the notes that swept me away to a land that had no time for chatter but that lost itself in a hope for a better world, a kinder world, a world that embraced uniqueness with gratitude rather than indifference or with a celebratory embrace rather than an ironic grin.

I can hear the banging of the doors now, doors that represent corridors of silence, loss of truth, identity and liberty. Corridors that told me that I was the wrong shape, corridors that told me that I had to conform, try harder, stop thinking, stop feeling, stop believing for better, corridors that told me that my esoteric ideology was indicative of ‘oddity’, my aloofness symptomatic of a disturbed mind, my need for creative expression an excuse for opting out of reality and my overwhelming anxiety at the world around me futile and hopeless, unless treated with sedatives and mind altering ‘therapeutic interventions’ with a blind eye turned to contraindications for the rest of my sorry, likely short lived existence. Crash, bang, wallop……….falling under the lights, the stresses of life, getting sent to places of ‘safety’ that were never safe at all, walloped with medication that rendered my spirit dried up and unrecognisable, morphed into someone else, anyone else other than my own truth. Subtly manipulated, moulded into an eclectic mix of ‘otherness’ that rendered me sufficiently altered to ‘fit in’ and yet far enough removed to no longer recognise my own face, the face of reluctance and disengagement, the face of an autistic child .

Well, I climbed out of those corridors, on every single occasion I climbed out, ran faster, sang louder, painted bigger, studied harder, achieved more, scaled greater career ladders, proved my worth, made my way, crashed, banged, walloped and did it all over again, year in year out. Crawling on my belly to the tune of an unrecognisable song, convincing myself that my own song was misguided and quietened for my own sake, humming it under my breath as a secret mantra, hidden, stifled, stilled. I was “Ju the cleaner, Ju the glue factory worker, Ju the artist, Ju the painter, Ju the musician, Ju the student, Ju the social worker, Ju the senior practitioner, Ju the lecturer, Ju the teaching fellow, Ju the carer, Ju the bereaved daughter, Ju…………the missing person”. I had always been a missing person.

So, as we near International Women’s Day 2020, I find myself asking how many more women have spent their lives battle ready, beaten down by misdiagnosis, medical intervention and the message that tells us that our ‘difference’ is a problem needing resolution? How many more women have lived and died and not known that their uniqueness was a gift to the world that chastised them? How many more women have left us not having told their stories, shared their wonders, lifted our spirits with inspirational contributions? How many of us have quietened the dance inside of us and respectfully allowed society to bind our own hands and feet in the name of ‘normal’. I doff my cap to those women now because I am one of the lucky ones.

I close my eyes today and I focus on the fading silhouettes, the beautiful profiles of those women who have gone before us, those who have trodden corridors of silence, those who have withdrawn, battle worn, those who have protested and rocked and spiralled and faded without having had anyone truly listen to their stories. Well…….. I’m listening now!. And, if I reach out, slowly, tentatively, I can embrace them all in a whisper, the songs of angels unawares. Listen with me to the unique voices of wisdom, of humour, of collective empathy of stealth and resilience, of misunderstanding, of disbelief and of solitude. Close your eyes and see the lines on the faces of those who have been to this earth, this incredible experience of life and breath with the privilege of smelling the scent of the colours and tasting one’s own tears. Come with me my friend, to a place that will today choose to acknowledge those of us who have gone before and left us without having ever known the freedom of truth. Come with me, let’s walk together through places that make us feel lesser, hurt deeper, try harder, fight stronger because as we hold tight to one another we shall inadvertently be passing the fading silhouettes of those who have gone before us and we shall be stronger for it. Come with me, hold my hand, let me allow you in, offer me the privilege of accepting our shared truth, our difference, our diversity and our rainbow, for with each collective battle we shall be standing alongside those who never knew their own strength. Let me stand beside you when our darkness comes and run with you when our laughter rattles walls and brings down barriers. I close my eyes and I hear the ones who have gone before us, shouting us on, see them waving their hands on the sidelines and telling us to keep running, keep believing for better, keep standing strong, keep kicking back, keep refusing untruths, myths, misdiagnoses, character bashing, energy sapping shortcuts and rat runs that lead us up blind alleys and lock us into dead spaces in the name of bureaucracy, funding, assumptive, pre-conceptive, stereotypical labelling and instead, let’s offer up a rainbow coloured pole vault to the memory of lost women that gives us the stamina, energy and pure will power to traverse the highest line of resistance in the pursuit of our right to breathe and dance to the unique tune in our own heads.

Join me in remembering autistic women everywhere who never got to feel the colour blue.

With love on International Women’s Day 2020
Ju

“When we close our eyes” – hope for a better future for autistic women and girls

“Out beyond ideas of wrongdoing and right-doing

There is a field

I will meet you there”

RUMI

There was once a little girl who danced to the rhythm of the daisy petals she scattered, a child who captured in her imagination a sense of velveteen calm through the scent of the lilac buddleia tree where butterflies settled in silence and stayed with her for a while. Where the fragile wings, juxtaposed across powder blue skies made her feel like bursting and where as a toddler she had marched up and down the low fronted wall of their factory house yard playing ‘Hey Big Spender’ on her toilet paper and comb. And, on one special day, she and her mum had walked hand in hand along a street to the home of a woman who had advertised in the local shop. It was there that the little girl got her first bicycle, a three wheeled red framed trike with a very large, metal bread bin screwed to the back, perfect for carrying the one armed, bow legged, sorrowful teddies rescued from the community centre jumble sales. She loved that bike, the rattling sound going up and down the curbs and the freedom of peddling through the allotments where neighbours grew their veggies and flowers, collecting sticks and pebbles that once engaged with she couldn’t let go of. She still has them….those inanimate friends.

And yet it isn’t these overriding memories that awaken her in the night, not the comfort of knowing that she was loved and cherished and nurtured and whole. All of that innocence was taken away, suspended in time, in the name of undiagnosed autism, the magic, the music, the creative spirit, stolen ……as if holding a tiny bird in an open palm, holding it up to the earth gods and watching it fly, unbroken, untamed, un-silenced. And as it left the birds of prey came, pecking and goading and the white picket fence closed as the asylum gates opened. And those mystical powers were smothered with drugs and power and an energy that even the strongest of adults could not have rebuffed. And the keys turned and the unheard stories were muted and shamed, carved into the very pores of the mortar that cradled it. And the dreams ended and the battles started and the child died.

And there followed a forty year battle of wits between the hidden gem and the monster earth until one day, lying in the dust, battle worn and broken the little bird who had flown returned, weather worn and yet more beautiful and it settled on the woman’s failing spirit and it whispered, the quietest of promises, the strongest of resolutions. And the softness of its tiny wings brushed her skin and sang a song of lost decades and broken promises, and the dawn chorus began, like a symphony and she arose, with arms raised she arose and she spun and she danced and she laughed at the sun and she moved to the rhythm of her own song and the butterflies settled and the daisies grew and the hope was not lost.

May all of those taking flight today find their gentle way back home and may those who sacrificed their lives on the alter of ignorance, who close their eyes and see the horrors, hold out their gifts of wisdom and of empathy and of solidarity until every cage is unlocked and every spirit flying free.

Ignorance is the default setting for a compassion less world

Knowledge is the gift of hindsight and reconciliation

Progress is being able to identify the difference.

I am no longer governed by the pain but I refuse to forget.

I want to be the difference .

With love

Ju x

“The past is never where you think you left it” (Katherine Anne Porter) In support of excluded autistic children whose gifts are being forgotten. Is history repeating itself?

cropped-little-ju1.jpg

School Reports

January 1975 “ This girl is somewhat nervous” “Needs to try harder” “ Somewhat lacking in confidence, she must realise that she has the ability and must make every effort to exploit it to the full”

July 1975 “Capable of excellent work but refuses to concentrate” “More attention needed” “ Very disappointing, needs to concentrate”

January 1976Is capable but makes no effort” “Better behaviour required in class” “Is inattentive” “Capable of Better” “Must not waste her ability”

July 1976Has lost concentration” “Has lost interest” “Doesn’t work hard” “Seldom appears interested” “She must try or she will fail”

January 1977Makes no contribution” “Has withdrawn and made no progress” “Hampered by illness” “ Illness has left little time or room for concentration”

July 1977 “When present tries to catch up” “needs to be fired with more enthusiasm”

January 1978Progress marred by absence” “Absence makes progress impossible” “Works in a quiet way” “Handicapped by absence” “Room for improvement”

July 1978 “ Tries to catch up but let down by illness”

January 1979 “Often very lethargic” “Is not likely to pass exams” “Does not appear to have had any significant change in attitude” “Appears disinterested in life”

January 1980 “Takes no active part in lessons” “Limited interest but otherwise capable” “If she could avoid trying to solve the worlds problems and concentrate on her immediate future she may do better in life ”

Joint Matriculation Board  General Certificate of Education -O Level Grade E Art

(course work sent in pupils absence due to hospitalisation)

 

Hospital report 1977 “This girl needs immediate admission as an inpatient due to social isolation”

 

Hospital report 1979Extremely shy introverted girl, inhibited in the expression of ordinary emotions”

Hospital report 1980 “It is likely that this patient will fail”

Mensa Report undertaken in hospital April 1980The IQ test of this young girl marked and according to this exercise, intelligence quotient appears to be higher than 90% of the population on Cattell scale”

As a teenager I had been chastised at school for reading ‘Zen and the Art of Motorcycle Maintenance’ by Roger. M. Pirsig, in the back of a religious education class. My school report had read, ‘ would do much better if she concentrated on her work rather than on trying to solve the world’s problems’. Sure, I could see the sense in that; if only I had put my heart and soul into studying a potted history of the nail industry or perfected the art of saying ‘there’s a cat up the tree’ in French, my life may well have turned out a whole lot differently. Fact was, I was a kid who struggled with her social environment  and the questions that I had needed answering were often obscure and magical and would often result in flippant responses and a threat of detention and ultimately to the gates of a mental hospital aged thirteen.
My life was spent virtually drawing around architraves, skirting boards and bevelled edged tables because that’s the only thing that made sense to me, it was ‘my normal’ and made the imbalance in my head level again. I never talked about my bevelled edges, there didn’t seem much point. I knew that it helped, far more than the medication, but they undertook psychological tests, concluded that I had a high IQ and advised that I join MENSA. Instead, I  joined The International Songwriters Association was admitted to hospital and disappeared inside of myself, never to ask those questions again.

As a society we have historically judged a persons worth by their capacity to ‘fit in’, to ‘conform’, to ‘look like everybody else’, to think like our peers, to act like our peers, to develop like our peers, to aspire to be like our peers, to achieve academic excellence. Those who couldn’t were deemed as awkward or rebellious or non compliant or simply unteachable. Our questions too deep our reflections too obscure our demeanour eccentric and quirky and challenging and threatening of the status quo, we stirred people with our inability to rise to the social occasion, dress suitably, read appropriately, ‘concentrate properly’. In fact just about everything about ourselves created a problem, we were either too interested, not interested enough or simply unable to engage with a system which required more from us than we were able to afford. Our differences weren’t deemed as assets but as hindrances our perspectives on life not appreciated as possible or feasible or credible but as fanciful and no sooner had someone squeezed us tightly into their neatly ordered boxes did we burst out and flee either of our own volition or by invitation.

I grew up believing myself to be ‘odd’ and by default I was because I was the only kid in the school who had been repeatedly carted away to an adult psychiatric hospital where I had learned how to survive on my wits, buried my friends and absorbed the essence of life with dispossessed people before being repeatedly returned to a school where kids called me ‘mental maggie’ and I was chastised for staring out of the window wondering if space was really infinite rather than concentrating on a format of reading a book about salt mines and answering questions on it in the absence of any teachers.

I understand that back in the 1970’s things were inevitably different. I am able to accept that people like me were misunderstood and dare I say therefore let down by the systems that held us and we all know now how the lack of safeguards have resulted in the most heinous of crimes against vulnerable people unable to defend themselves. That’s why I spent the crucial years of my career in social work, because I felt it. If anyone asks me about my own story today I can say with a deal of forgiveness therefore that that was the seventies, things like that don’t happen now, we have moved on, we have learned from the past, we are wiser, kinder, fairer, safer, stronger as a result.

I hang my head in shame when I learn of children who in 2019 are unable to access education because of their differences, their uniqueness, their authentic, beautiful minds. Those who, whilst challenged by systems and restrictions are cut adrift from their peers and their youth and their right to question and learn and grow, instead blamed for a lack of self control rather than embraced for being themselves, told that they are failing.

Qualifications as an adult

• Fellow of HEA (Fellowship of Higher Education Academy)
• PGCert Ed Post Graduate Certificate in Higher Education Teaching
• Post Qualifying Practice Teaching Award
• B.A. 1st Class (Hons) Social Work
• Post Qualifying Award in Social Work
• M.A. Social Work
• B.A. 1st Class(Hons) Fine Art

In February 2019 at Lorna Wing Centre for Autism National Autistic Society I received the most validating report of my entire life. “Ju clearly presents with an Autism Spectrum Disorder” recently described by my own GP as “long overdue”. The chaos of those early years makes sense now and I have been able to grieve for them properly. It has take  56 years for me to be told why life was so difficult but I have the joy of knowing now, I can live for the remainder of my life as myself, wiser for it as the creative artist I was always meant to be. But that was the 1970’s, surely things like that don’t happen now?

I have a list of qualifications that I went on to achieve in spite of the early forecasts and I humbly hold those as reminders that whilst academia is not the most valuable of things in life these are symbols of hope now. I think the most poignant thing for me to share is that my over riding memory of learning is not as an adult ploughing through every waking hour studying in order to prove my worth but in the words and phrases and actions of early education that sent the message that I wasn’t likely to achieve anything, ever, because I was the wrong shape for the educational system available to me. If we send these messages to our children now they will remember and quote us in the future just as I have in mine.

I don’t pretend to know why we are still failing autistic children in 2019 but I  do know from first hand experience what it feels like to have been that child and my heart breaks for the young people who will one day become adults and ask of us all; “How did this happen?”

With Love,

Ju x

 

 

Keeping Faith ( Serendipity – finding treasure in unexpected places).

31452105-D0D2-4033-9F40-7532C659BAD1

When my wife and I sat down to watch the first series of Keeping Faith, we were little prepared for the incredible impact that its beautifully depicted story would have on our own recovery as we privately waded our way through the complex aftermath of having lived through our own experience of ‘missing‘. There in the heart of this incredibly emotive art form laid bare the rawest of pains, the most fragile of journeys, the essence of becoming lost that only those who have known vulnerability as debasing as this could dare to embrace. It was without doubt a woven masterpiece of gutsy dialogue, heart stirring music (Amy Wadge) and poignant silences; of gently handled damaged pieces of life experience, hanging like shards of coloured glass, that with the slightest of breath could cascade into something far more representative of resilience than brokenness. I think it is a rare gift indeed to have been privy to such timely sensory images of lostness that had unconsciously held us both in a grip that had whispered; “You are understood and you are not alone“. For we ourselves had hung in that fragile, lonely space not knowing how to justify, clarify or indeed demystify what for us had been a life changing all consuming phenomenon. And, as we sought to understand the ensuing chaos, we had been gifted with this precious story that not only gave us a template for reference to others questions but equally a level of emancipation that endorsed our place of strength and determination to face the grief, the loss, the devastating diagnosis that had led to this spiral into oblivion. What wonderfully liberating moments that saw us shouting out at the television, laughing from a place of pure defiance and crying with utter relief that we had been the fortunate ones, reunited ones…… the found ones. This work depicted the dynamic of missing in those early days of confusion and terror, the unknown, the scrutiny, the personal reflection, underwritten by flashbacks and questions and fears and truths and desires and regrets and loyalties. This was a friend who came and walked alongside us at a time of deep pain and exhaustion not in a patronising way but in a way that raised us up with a fire in our bellies a fire that has and is and continues to be the battle worn cry of women throughout the ages who will not be beaten and who will, in their own collectively supportive way, forgive and protect and fiercely defend those whom they love. We count it a privilege to have met and shared our story with writer Matthew Hall and actor Eve Myles a meeting that was as gentle and empathic as the work itself because this series comes from a place of authenticity and truth devoid of ego, a million miles from the trappings of red carpet grandeur, a hidden gem in the welsh hills that was honed and brought into the light to sparkle and man….did it sparkle! This wasn’t a series that neglected responsibility, it was gutsy and honest and truthful and painful and funny, just as life is for all of us. Keeping Faith was as courteous as the people who worked on it because it captured human turmoil without ever diminishing or seeking to undermine it, it was unafraid of engaging with the raw emotion and of holding it there, just long enough to feel it in the pit of your stomach before bursting out into self deprecating humour or the contrasting hustle and bustle of scooping up your children and running with the messiness of life that doesn’t afford us the luxury of self indulgence for any longer than is absolutely necessary for survival.

So, as we reach the end of series two and the credits roll, we shall not only be doffing our cap to old friends but also gently and thankfully acknowledging our own strengths by embracing the wonderfully eclectic, creative opportunities and processes that afford us the capacity to depict life in all of its complexity and beauty and to accept it with humility and gratitude. At a time when life is so divisive and destructive, let us walk alongside one another in such a way that doesn’t necessarily require words but simply whispers into the ether a powerful message of solidarity “Keep the Faith, you’re not alone”.

With Love,

Ju