'They think disability is almost worse than being dead' By Kate Scotter

BBC News Published duration 25 November 2019

image copyright Gingerdog Records

"I won't let you make me feel bad for the things I cannot do, I am tired of being talked over by people like you."

To watch Tilly Moses perform her folk music on stage, there are no visual clues she's disabled - although the message is there loud and clear in some of her lyrics.

A year ago, Moses was diagnosed with fibromyalgia , a chronic condition that causes pain and fatigue. It often comes after a big shock to the immune system: Moses, who grew up in Stanton, Suffolk, had meningitis when she was 11.

She says her fibromyalgia can leave her so tired she passes out. It also affects her cognitive function and she can be in a lot of pain, and she sometimes has to use a walking stick or a wheelchair.

"When people see me, because I'm young and I'm performing, people assume you can't be those things and be disabled."

The misconception annoyed her and so she started writing songs about it.

image copyright Joshua Simpson

Moses, 21, says it wasn't until she started to class herself as disabled that she felt "liberated", although she's been shocked by the responses of some people.

"Disabled people aren't represented in the media fairly; there's a lot more to being disabled than what people think," she says. "It's a societal issue; there's this attitude that a disability is something to overcome."

On one occasion when she had her walking stick, she sat on one of the disabled seats on a bus. A woman was talking loudly about her, saying she must have been faking it because her makeup was done so nicely, she says.

"It's as if we're not full people and that we live such tragic lives that we wouldn't think about makeup and dressing nicely. I couldn't believe what I was hearing; I was gobsmacked."

Another time, she was at an airport and her boyfriend was pushing her in a wheelchair. He was messing around and pushed her quickly down a ramp, causing her to laugh because it was funny, she says.

"A man looked at me and was so perplexed. There's a perception that my life must be tragic and why would I be laughing. My life is fine, I wouldn't change anything.

"I'm happy but people find that really perplexing, as if being disabled is almost worse than being dead. I've got friends, family, a boyfriend, a career, my music. Sometimes I can't get out of bed but that's fine."

The University of York politics graduate, who released her first album in 2017, says she built up an audience base and enjoyed some "minor success" before her diagnosis. She hopes to use her platform to continue to talk positively about disability, and share people's stories and ideas that "don't get aired in a musical capacity".

"I'm making a small difference where I can and I'm really honoured to be in that position," she says.

image copyright Gingerdog Records

Disabled academic Gill Loomes, who has multiple conditions including fibromyalgia, says what Moses is doing is "really quite important".

"One of the things that amazes me is how she manages to get some quite complex political social theory into song lyrics and makes them lyrical and accessible without losing the context. A "stand-out" song for her is The Social Model.

"I am not broken nor a problem to solve, I am not a learning tool to make you more evolved,

"I'm a passion and a person, I have ambition, love and drive,

"I could be free of all the shackles you draw on me in your mind if you'd let me be."

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"To have someone in Tilly's position, who not only has a grasp of the condition with all its nuances and complexities but also can put it in a way that grabs people's attention, is a really achievement," says the 36-year-old, from Halifax. "It's almost an agenda for disability rights politics; it's great to have somebody actually putting these issues on the public agenda."

For Moses, who says she's "really proud" to have written songs that resonate, her music doesn't just give her a voice - it also helps to muffle the negativity faced by disabled people.

"I find it empowering to stand up on stage, singing about my life and what it's like to be disabled without fear of anyone interrupting me and telling me I'm wrong."