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“My mouth is my tool, my superpower is my imagination”

Demi is a 21-year-old artist who lives with Riboflavin Transporter Deficiency. She uses her art to craft her own inner world as well as to shape the world around her.

I have always loved art. My love for art probably began in nursery. I remember loving the smell of paint and I even used to love the feeling of putting on those kiddie waterproof apron jackets!  

As I grew older, I found a new way to draw as my arms and hands became weak pre-diagnosis. I began to paint using my mouth and feet! I used to have a Nintendo DS and did my drawings and mini animations on there. I got my first iPad with my stylus in my mouth when I was 11 or 12.  

My family, especially my mum, and my teachers encouraged me to pursue a career as an artist. I was in my mid-teens, being a typical teenager, I ignored everyone and said I’d never be as good as an artist is supposed to be. I started disliking art because of the high demands in my school art lessons and because I hated writing artists’ histories due to fatigue.  

Now, I love art and history and am doing an Art & Design level 2 course. I have a support worker, provided by the college, who helps me set up the ‘arm’ that holds my iPad in place, so I can access my college work and tutorial PowerPoints. I just want to prove that I have what it takes to become a successful artist and to hopefully inspire everyone with my determination and my goal to work as hard as I can.  

I was the first person in the world to be genetically diagnosed with my condition

I was diagnosed with Riboflavin Transporter Deficiency (RTD) in 2011, when I was 10 years old. It’s estimated that one in a million people are born with RTD. I was told that I was the very first person genetically diagnosed worldwide with RTD type 2.  

It took what felt like a zillion tests before they were able to get a diagnosis.  I don’t remember exactly how I felt as I was only 10, but I know my family were relieved. It was a very emotional rollercoaster ride, but we made it to the end eventually. I’ve been on a high dose of Riboflavin and Q10 vitamins for years, and thankfully, my condition has remained the same. Whilst it is not a cure, it is what’s available now until further research and I’m eternally grateful for Great Ormond Street Hospital and their determination.  

Living with a disability can really mess with your mental health  

You can start to compare yourself to others and can feel limited by the lack of accessible ways to get involved in activities you want to do. You’re left with a particular longing to take part in certain activities. There are many things that I wish I could do and have, things that able-bodied people have, but they just seem impossible to me.  

For example, I wish I could travel around Scotland and Europe. I wish I could hang out with friends without them feeling uncomfortable and without having my support workers present. I wish I could wear what I want, but with a body like mine there’s not many options. I wish I could attend concerts or musicals, but wheelchair spaces are always full and too far away from the stage. I’m registered blind and unable to see the stage from far away. 

Most of all, I wish my life matched my imagination.

Truthfully, life with a disability like mine is depressing. You have to take risks and find other ways to deal with it; it’s not easy. It sucks that my disability is a reminder of that every day. 

My favourite part about being creative is living in my imagination

It amazes me to see what I can do in my mind, so I try my best to show everyone what I see, through my writing and my visual art. It also gives me unlimited freedom; to do the things that I can’t do in reality. I want my art – linguistic and visual – to give my audience powerful messages.

When I’m in an imaginary world, that’s the only time I can be who I want to be.

I want everyone to know that just because they’re disabled, it doesn’t mean that they have to stop finding ways to make life work. No one is allowed to tell you what you can and can’t do. If you want to be a lawyer, a teacher, an accountant, a gamer, an artist and so on – do it!  

Try it and remember failing is part of the process. I’m still a student studying art and I believe I can be a successful artist in the future. All it takes is practice, failure and learning. My mouth is my tool, my superpower is my imagination. 

Disabled people just want the same life experiences as everyone else. There’s only one life to live, let us have a chance to access anything we wish. Don’t overlook our abilities. 

Our ‘Spotlight’ series is shining a light on the experiences of people within the muscle-wasting community. Explore more of our blogs or get in touch to share your story.

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