Karen Sheader – The Need to be Creative


Karen Sheader, writer, film-maker, activist and musician of the Fugertivs fame, talks to Lisette Auton about the parallels between their journeys through Disability Arts

Woman behind mic

Kaz Sheader with the Fugertivs, 2000

Karen welcomes me in to her home and we bond over our dogs who both like being Neighbourhood Watch stalwarts on window seats. Karen talks about her impairments and how she’s always had “a real need to be creative, a desire to not just vegetate.”

I ask if she thinks those are linked and we discover that creativity began in the same place for both of us: “I don’t know. As long as I can remember I’ve wanted to write, since I was about 7 years old.” We cackle over the joint realisation that we were just copying Mallory Towers, getting bored halfway through and then writing; “the chemistry lab exploded and everyone died.”

Karen was born in the sixties and her parents fought to keep her in mainstream education: “But there were no learning support assistants or anything like that – you just sank or swam. So in the end I found it easier and more attractive just to be the class clown and make the cool kids laugh so that they wouldn’t bully me.” Like me, Karen did homework for other kids too, but unlike me, she charged them for it and spent it all on stationery. She spent the rest of her school career pissing about, not applying herself and hanging out with the cool kids.

“It couldn’t happen nowadays, cos it would be so shocking, but I was the last but one class to take the eleven plus, and when I’d been messing around for a few years my mam got called in to see the headmistress, and she told my mam ‘We know that Karen couldn’t have passed the eleven plus because Karen isn’t intelligent.”

Karen had been sent to the technical college. Unknown to her or her family:

“A panel of educational psychologists and social workers had decided that I wouldn’t be able to keep up in the grammar school system, so sent me to the next stage down. By then I was 15 and it was too late, but I always think if I’d known that, if I’d had that verification of intelligence, maybe that could have been the trigger to get off my arse. But I never got the chance.”

Performers on stage

Kaz and Del performing.

Discrimination just kept on coming. Karen wrote to The National College of Journalism in Darlington, the nearest thing she could think of to writing, and was rejected for her visual impairment – they told her she would not be able to survey a scene from a distance and was therefore not suitable:

“I wrote back. I said that’s not the sort I want to do, I want to be a feature writer. They didn’t bother to reply. I was unfortunate enough to be born in a time when discrimination wasn’t just normal, but acceptable.”

Karen got a “boring job in civil service”, but the passion for writing never left. In a way that parallels my journey, little things came together to lead to the moment of encounter with a new world. Karen came to the attention of the organisation now known as Tees Valley Arts through a writing group she was running and paid workshops she was leading in schools which came from writing stories for her own children:

“They wanted to develop me. As a woman writer. As a disabled woman writer. Ripe for ticking loads of their boxes. I used to say, I’m not a woman writer, or a disabled writer, I’m just a writer. She just kept on bugging me. And eventually, and this was like a Damascene moment in my life, she asked me if I wanted to go to this Disability Arts gig.”

There Karen witnessed D/deaf dancers from Russia dancing, a guy with CP using a keyboard to narrate a story, and Ian Stanton. “Absolutely fucking brilliant. Blew my mind! Just exactly how I felt.” Karen turned to the musician she was in a relationship with at the time and said with tears in her eyes: “This is what we should be doing.”

As well as signalling the birth of The Fugertivs, this night also lead to the beginning of the organisation Karen still runs in Hartlepool. A gig that Karen performed at was filmed for event coverage by Carpet Films. Karen was offered a part in one of their projects:

“It was a full length feature film, and I was over the moon because I’d never done film acting. And I met these two guys, and they became my best friends.”

Woman lies on bed

Kaz in a still from the SYMO film ‘Charity’

Meanwhile in 2001, Karen had got a full time job at Cleveland Arts as Project Manager and part of the remit was to do a film project with disabled people. “I decided to call it Shoot Yer Mouth Off because I wanted it to give disabled people a voice. I suggested Steve and Del cos of the project we’d worked on.”

Karen had made such a powerful impression on them that despite an offer to go and work on Dog Soldiers, they made the choice to work on the SYMO project:

“Basically they ditched their entire film-making career and we’ve been together ever since. Nearly twenty years now. (…) We scraped a living together because it was the noughties and there was loads of money flying around for Disability Arts – a totally different environment to now.

When personal budgets came out Karen was working with a learning disabled drama group and asked if they’d be willing to all pool together to create a group, and that was the first day of SYMO as it is now; “Our first session was 20th July 2007. We had no furniture. We had no nothing really. We had energy and a willingness to make it happen.”

We talk about the future of SYMO as Karen is now nearly sixty, its anti-hate crime project, the difficulties of attracting new members due to college status at post 19: “Choice and control, it’s bollocks. It’s about who gets the money.”

And then Karen had a car accident and broke both legs, which stopped her working and brought her directly into the nightmare of Universal Credit. We talk about fear, the current political climate, and how this breeds terror and silence. Karen didn’t get paid for 16 weeks:

“Feeling that the country you live in doesn’t give a shit. Nobody cares. It’s hard to come to terms with, that no one cares. It’s designed to make you give up.”

If I’ve met anyone ever that is the epitome of sheer force of nature and strength, it’s Karen, and that comes through when she agrees to let me publish something that she is ashamed of. “During Universal Credit Hell I contacted a journalist and she featured my story on her page. Then, later on, after it was all sorted, she asked if I’d be interested in taking part in a video. I didn’t. I was scared to rock the boat.”

If Karen is scared of the consequences of speaking out having been through such a traumatic process, how many more disabled people are scared too? How do we hope to continue a movement of Disability Arts when there is this level of fear about just existing, never mind creating? “I was terrified by that, the weeks and weeks of no money –  writing songs about it was the last thing I was thinking of doing.”

We talk music and words and dogs and mobility scooters, about the Open University course in creative writing Karen is undertaking. Before I leave I ask Karen if she has any advice for people new to Disability Arts:

“You do have to make it happen for yourself. If I hadn’t started writing children’s stories, then working in schools and running writing groups – that’s where it all began. Without that, nothing of the rest would have happened. Just do it.”

I leave having made a new friend, proud of the North’s part in the history and fight, which allows me to be where I am today, and with a cracking soundtrack pumping on my car stereo.