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.
With love, Ju