Heart n Soul’s Big 30 Archive is full of personal stories that challenge society’s idea of what people with learning disabilities can do. Mark Williams, Heart n Soul co-founder, shares some of the photographs and voices of artists, participants, friends and staff, with and without learning disabilities.
Heart n Soul artist Lizzie Emeh, Photographed by Franklyn Rodgers. Source: Heart n Soul Big 30 Archive. © Heart n Soul.
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“I hate that word ‘normal’. Normal to me is like a cycle on a washing machine,” says Lizzie Emeh, one of Heart n Soul’s music artists. Her parents were told at her birth that she wouldn’t walk or talk, yet she has gone on to be the first learning-disabled artist to release an album of original songs in the UK.
Actor, writer and musician Mat Fraser, Photographed by Franklyn Rodgers. Source: Heart n Soul Big 30 Archive. © Heart n Soul.
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“Blowing away our notions of what is and isn’t viable entertainment… people were allowed to be how they were,” says Mat Fraser. He started collaborating with Heart n Soul in the 1990s and as a performer was excited to see learning-disabled people making high-quality theatre and music on their own terms.
Heart n Soul employee and co-founder of Perky, Ono Dafedjaiye, Photographed by Franklyn Rodgers. Source: Heart n Soul Big 30 Archive. © Heart n Soul.
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“What I would like to change?” asks Ono Dafedjaiye. “For women who have a disability to have more choices about their bodies.” Ono is Heart n Soul’s longest-standing member of staff and co-founded Perky, a community interest company that opens up conversations about womanhood, the body and sexuality among learning-disabled women.
Heart n Soul artist Dean Rodney Jr, Photographed by Franklyn Rodgers. Source: Heart n Soul Big 30 Archive. © Heart n Soul.
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“After the performance was over, I was so happy I fell down to the ground – fell down to the ground with excitement!” says Dean, the charismatic lead singer of one of our best-known bands, The Fish Police. They played at the opening ceremony of the London 2012 Paralympic Games and at the South by Southwest festival in Austin, Texas, last year.
Mark Burgess, Photographed by Franklyn Rodgers. Source: Heart n Soul Big 30 Archive. © Heart n Soul.
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“To be having a job, you feel like you’re doing something,” says Mark, who has been involved with Heart n Soul from the beginning and is now vice-chair of our Board of Trustees. He is passionate about people with learning disabilities having more opportunities to contribute to their community and get paid work, compared to the 6 per cent currently in employment.
Heart n Soul Taking Part staff Jenny and Ricardo, Photographed by Franklyn Rodgers. Source: Heart n Soul Big 30 Archive. © Heart n Soul.
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“I never won Dele a single match of chess, which is quite frustrating and quite beautiful at the same time,” says Ricky, one of many who has taken on our participant Dele in chess, only to be beaten in 30 seconds. When non-disabled people work with people with learning disabilities they are often surprised by what they can do. Then they realise… they shouldn’t be surprised any more.
Pino Frumiento, Heart n Soul artist and co-founder, Photographed by Franklyn Rodgers. Source: Heart n Soul Big 30 Archive. © Heart n Soul.
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“I thought, this isn’t for me, that’s it, I’m going. I’m going away from the day centres, I’m not staying there no more,” says Pino Frumiento. The lack of opportunities available in day centres led to Pino and me starting Heart n Soul over 30 years ago. By working on music together we discovered Pino’s incredible voice and songwriting talent.
Terry Crew, Photographed by Franklyn Rodgers. Source: Heart n Soul Big 30 Archive. © Heart n Soul.
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“I just felt there was a need for a club… away from parents, and away from rules and regulations,” says Terry, who has run the Tuesday Club, a weekly evening for adults with learning disabilities, for 40 years. Events like this and our Beautiful Octopus Club were the first opportunities to stay up late and have a night out like everyone else.
Kali, Isaac and Arthur (aka Too Hot for Candy), Photographed by Franklyn Rodgers. Source: Heart n Soul Big 30 Archive. © Heart n Soul.
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“I think now people are starting to take more of an interest because they’re like, wow, Kali can really do this, she can really do that,” says Kali. Too Hot for Candy, the band Kali is a member of, is an example of the originality that happens when people with and without learning disabilities work together to create something that each would not create on their own.
Tilley Milburn and Del the Piggie photographed on a World War Two London bus, Photographed by Franklyn Rodgers. Source: Heart n Soul Big 30 Archive. © Heart n Soul.
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“I can be a bit controversial,” says Tilley, a multi-talented Heart n Soul artist. She and her best friend Del the Pig are a double act and have been working with us for years, breaking boundaries with comics about autism and their very own style of performance art, ‘Puffing and Wooling’. They also work at Wellcome Collection as Visitor Experience Assistants.
About the author
Mark Williams
Mark Williams has been Artistic Director of Heart n Soul since he co-founded the company in 1986. He is now also leading a new research project exploring perceptions of society, health and wellbeing through the lens of learning disability and autism at The Hub at Wellcome Collection.