Disability History Month 2020: Julie McNamara pays tribute to beloved comrades of the Disability Arts Movement

Magazine cover of Disability Arts in London – DAIL on its 10th celebration in 1996 featuring the late Chris Ledger (left). Poster of the Workhouse Disability Arts Cabaret by the London Disability Arts Forum, late 1980s (right).

My friend woke up in an Intensive care ward with DNR written over her head. DNR, Do Not Resuscitate. Before we left that unit, we’d ripped it off the wall and stuck a picture of a well -groomed male in Highland kilt, blowing up over his pert naked and very fulsome arse with the words NOT DEAD YET! scrawled underneath.

We have to push back.

How swiftly our humanity has been reduced to statistics. Disabled and Deaf people, now neatly parked aside as “the vulnerables” and “those with underlying conditions” are literally left off the agenda in the latest hard decisions in budgets squeezed together by this government’s drive towards economic recovery. Left off the agenda and erased entirely, if you’re Deaf and need British Sign Language interpretation – still missing from our national daily Coronavirus briefings! Meanwhile we are dying in numbers too great to grasp. We have barely time to dust ourselves down from the one brutal funeral to another with scant numbers of mourners being herded through like sheep at the dip to gaze briefly upon a closed casket with little ceremony. I have attended four funerals on Zoom (detached but desperately grateful to be able to see familiar faces touching the coffin, or playing that tune) and three quiet gatherings with candles aflame, stories and songs in the empty room about us. It has been tough, but where there is breath, there is hope. And sometimes we might feel we are drowning in tears, fighting for our very breath, so we shield each other, we gang together, those who can take the frontline today take the lead. Those who are weary and worn down, sit back awhile, turn your face towards the wind, the sun, the stars, the smell of the earth. If living on the 17th floor without a lift makes that too tough, go deep into your imagination and dream. They cannot take our dreams away. Hope is what we do with our despair.

For those of us who have lost precious souls these past few months…

I appeal to my slapper angels, to the mighty women who have gone before me, who held me up in this lifetime, to the powerful fallen women at the grave of the Outcast dead. And when I am utterly unravelled, I ask:
Do you carry your dead within you or upon you?

Born between two dead sisters, Shirley Josephine and Linda, I have been acquainted with death my entire life. I still carry them with me. But the past is for reference, not for residence. I am cautious how many times I cross between the veils.

October 30th two years ago I was digging my mother‘s grave, my youngest sister watched with the casket holding her remains. A gravedigger with long hair in a silver plait, with a tightly rolled joint stuck to his lip, watched over me. “Don’t worry, the ground’ll settle with the weather”, I don’t know why I was affronted. My Mother wasn’t there. She wasn’t there when I laid her out and kissed her goodbye. She is out there somewhere, but not here, not in this clay soil. So, I jumped, danced, and pounded the ground beneath me. He watched unmoved by this Banshee, with the wounded animal that had crept beneath my skin.

Do you carry the dead within you or upon you?

Some of those ashes have been to Australia, Los Angeles and finally to the South Shore, Belfast Lough, Bangor – that’s the North of Ireland, not the Welsh one. Shirley McNamara was one of Chris Ledger’s favourite rebels and became her poster girl for Arts and Biscuits, University of Atypical’s creative hub and hang out café for people with Alzheimer’s. So, her ashes accompanied Chris Ledger on to the next great adventure.

Some of Chris’ last words to me speak volumes about the business of dying. She asked: “What the hell have you done to your hair?” I told her, “It’s a Covid cut, DIY…I did it myself”. “I can see that!” she said disapprovingly and turned to more important matters like where was Louise, her wife. Chris and me have known each other in arts and activism for over 30 years, and I am reeling at the loss of her. Where is she? That bolshy, wise, generous, soul with such a mischievous sense of humour, such a distinctive laugh that rolled from the belly upwards. The high femme punk queen of fifties fashion and ferocious red lipstick is nowhere to be seen.

Do you carry your dead within you or upon you?

Was it Caroline Gooding’s fault in 2014, she always led the way with her bright mind picking through the minutia of legal challenges to create the Disability Discrimination Act legislation back in 1995. I blamed Sophie Partridge for a while, Sophie who fought so hard to keep the Independent Living Fund, before it was grabbed by the government under the guise of reform. Sophie it was who made me stay and sit in on the debates at Equity’s Disability and Diversity meeting. “Stay here JulieMc, I need you here.”. “Well, I’m here Soph, where the hell are you?” Sophie started this bleeding out of our warriors of the Disability Arts sector.

I thought Katharine Araniello would go on for ever. I will miss that deliciously bitter humour, the sheer brilliance of her ingenious creative mind. She was a prolific activist and artist, determined to disrupt the complacency of the creative industries. There was a time, back in the early 2000s when our people were leaving in droves. I was distraught with grief. I lost my mind, my home and any sense of dignity.

Ian Stanton, a beloved comrade and giant of the movement. We were constantly thrown together on the same bill, the same shabby chic hotels, the same penchant for politics late into the dark after a show. We both loved Ian Dury whom we’d worked briefly with on the Poor Dear series that Sian Vasey had produced for the BBC’s Disability Programmes Unit. Ian Stanton was a hero of the Disability Arts Movement, writing some of the best anthems of our time. He left the stage too soon leaving our Audrey utterly bereft. Where are you now, out there somewhere still singing Tragic but Brave? Chip on Your Shoulder? And then you dragged Ian Dury off with you. That was just greedy. And I do believe the dead get greedy. They eat away your breath, sit hard upon your chest while your heart fights for every beat. We have lost so many giants of the movement, where do we begin to weave again, the web that holds us up?

Mike Oliver who helped reform institutionalised thinking, challenging charities and the medical profession with his concept of a Social Model of Disability, working constantly for change, for equal rights for Deaf and Disabled people that has had a lasting and far reaching international impact.

Do you carry your dead within you or upon you?

We have lost too many mighty souls who blazed the trail in Disability Arts these past few months. Sian Vasey gave me my first job in Disability Arts at London Disability Arts Forum. She was an unexpected rebel on her Queenly throne. I admired her constant wry comments, occasional caustic remarks and absolute refusal to take “No” for an answer, giving that steely eye and a stern reminder: “I am relying on you Julie McNamara!” She was flawed, like the rest of us, and I still giggle at the memory of her rolling around the pavement after a night on red wine, having fallen out of her chair outside Barbara Lisicki’s place. Those were the days when the coven would gather and brew trouble, the gang of four with Elspeth Morrison and Mandy Colleran frothing at the latest atrocities in human rights violations. We were planning the revolution and we almost pulled it off. Now Sian has wheeled off the stage, tugging on Geof Armstrong, whose activism goes right back to the 80s when National Disability Arts Forum was spawned. Geof who agitated and activated so many disabled artists in the North, now gone too suddenly.

How do we begin to address our losses? In 2012, well over 60 million people worldwide witnessed David Toole, fly high into the air across the Olympic Stadium, gracefully moving his powerful arms with extraordinary lightness as he flew to Bird Gurl? Dave, we hope you are celebrating with a copious supply of bubbles as you fly on and ever onward. Dave, the straight talking, Curmudgeon, grumpy old’ Yorkshire bloke whose dreams reached the stars, who broke the mould in contemporary dance and taught us all to fly.

Do you carry your dead within you or upon you?

We nurse the souls we’ve lost like ghosts within, inhabiting every room. We can light candles for those we honour, echoing their names. We can offer thanks and prayers of remembrance and speak in hushed voices while we speak of those we’ve lost. When truly what we want to do is bawl and rage in disbelief. We are bent but not broken. We are weary, but we won’t give in. No surrender.

Remember our slogan: NOT DEAD YET!

We carry our dead within us, deep into our bones.