I’ve always loved sharing stories that move people. That’s why I’m so excited to be releasing my debut single, Sirens.
At its heart, Sirens is a song about realising someone’s true nature in a difficult time – and being able to accept the reality of a harsh situation.
It’s a message that I’m hoping people will be able to relate to, in their own way.
My health condition doesn’t dictate what I can and can’t do
I was two years old when I was diagnosed with a muscle-wasting condition; as far as I can remember, I’ve had it all my life.
The condition affects every single aspect of my life, from how I get from A to B to how it shapes other people’s first impressions of me. That’s just the reality of having a physical health condition people can see.
But in no way does it dictate what I can and can’t do.
I’m an emotional person and can over-think things – writing music is a great way to process all of that.
I’ve wanted to perform and create art since I was eight years old.
When I was singing as a teenager, people would sometimes come up to me afterwards and tell me they were moved to tears by my performance. It always comes as a shock – but it’s a reminder of just how powerful music can be.
I’m a really emotional person and can over-think things sometimes. Writing music – and singing songs like Sirens – is a great way for me to process all of that.
Singing’s also a physical outlet for me. I love the physicality of singing and it’s great for my breathing and health too, so it’s a win-win situation!
I’d love to perform live and eventually tour one day but, in the meantime, I’ll be looking at ways to bring live performances to my audience in accessible spaces online. My next big music project will be a five track EP, or perhaps another single.
I’ve recently had a bit of a health apocalypse but once I’m better, I’ll be applying for music funding and creating demos.
Shocking people and challenging misconceptions
Alongside singing and performing, I really enjoy making films.
Film can be a wonderful medium for sharing new perspectives and helping us to empathise with other people – especially those who lead different lives to our own.
Part of film-making involves shocking people and challenging their preconceptions. In my short film Tax on Me, my team and I tackled the issue of care charges in Scotland. Often referred to as Care Tax, these charges impact over 10,000 people across Scotland. We framed the piece around asking questions like, ‘Why should someone be taxed for going to the toilet?’. It sounds ridiculous, but this is a situation disabled people face every day.
Disability rights are human rights. But at the moment, disabled people and those with health conditions don’t have the kind of human rights that many others take for granted.
I have to plan more and work harder to achieve my goals
I’ve always been an activist, but it’s not something I’ve ever had a choice in.
I’ve faced a lot of barriers in life – from healthcare to education to housing – but it’s not because of my disability. More often than not, it’s other peoples’ attitudes and Government decisions that stand in my way.
“I’ve had to challenge everything all my life because if I did nothing, things would be far worse.”
In order to facilitate my independent living and health needs, I require 24/7 support from a personal assistant. But because of the current care crisis and lack of Government funding, it’s really difficult to find the right people.
Living with a muscle-wasting condition makes life more expensive too. Whatever I want in life – whether it’s a holiday or house – I have to pay more than the average person.
At the moment, I live in a block of flats where I’m not allowed to build a ramp to the front entrance because of my neighbours’ objections.
I’ve had to challenge everything all my life because if I did nothing, my quality of life would be far worse. I have to plan more and work harder to achieve my goals, but I always get there in the end.
Activism is a marathon, not a sprint – take care of yourself!
There’s so much that needs to change. We urgently need more independent living support, access to healthcare, medications and equipment.
But to anyone reading this, I want to remind you to take care of yourself too. Activism is a marathon, not a sprint. It’s emotionally taxing and sometimes you have to pick your battles. I still don’t have an accessible front entrance but I have other problems to fight – and other goals to focus on.
Alongside singing and film-making, I’ve got degrees in film, psychology, and law; I’m an entrepreneur with an upcoming line of non-toxic nail paint; and I even manage to do a spot of gardening when I get the time.
When I set my mind to something, I do everything I can to make it work – whether that’s singing my heart out or campaigning alongside MDUK. I believe if we all do a little bit of activism, collectively, we can make a lot of change.
Our ‘Spotlight’ series is shining a light on the experiences of people within the muscle-wasting community. Explore more of our blog post and stories or get in touch to share your story.