My name is Demi and I’m 21 years old. I’m originally from Fife, Scotland, but I grew up in the North East of England since I was 4. Scotland will always be my home.
I have so many exciting hobbies. They keep me busy and play a vital role in my creativity, they are mostly through my iPad mini for accessibility and independence. I love reading fictional books. I hope, at some point in my future, that I become an author. I like to write down every artistic idea that comes floating around my mind. I also write sentences or phrases now and then when I randomly play an interesting scene in my mind. Because who knows, I might use these ideas properly one day in the future.
Music is my mentor… I listen to it nearly 24/7! The music and the lyrics help me to express my emotions through art and also help me play imaginary cinematic scenes for storytelling. People probably wouldn’t call this one a hobby, but I love doing research either to gain symbolistic knowledge, the spirituality on nature and its natural sources, or looking for inspiration via mood, colour, style and message. To make original artwork is to do as much research as you can about every little thing that surrounds you, and make sure your art either tells a story or connects to your audience emotionally.
I love watching movies & series with subtitles. I love going outdoors for fresh air, to admire nature that surrounds me and I also like to shop! And last but not least! I love creating art.
I was diagnosed with Riboflavin Transporter Deficiency (RTD) back in 2011, when I was 10 years old. I was told that I was the very first person genetically diagnosed, worldwide with RTD type 2. The treatment I was given – and still take to this day – helps slow down the regression of my rare condition. Since having been on treatment and showing huge progress for months, this led to allow doctors to easily diagnose more people and to give them the right treatment.
Fun fact: It’s estimated that 1 in a million people are born with RTD.
This is the link to the website all about RTD:
About RTD – Cure RTD
It took what felt like a zillion tests before they were able to get a diagnosis. The things I loved was going on a train ride from Newcastle down to London. I enjoyed interacting with the amazing nurses, doctors and professors at the fantastic, hard-working Great Ormond Street Hospital. I would always make them laugh because I was Miss Sassypants!
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, at least I’m not getting worse. It’s not a cure but it’s what’s available just now until further research and I’m eternally grateful for G.O.S.H and their high determination. I don’t remember how I felt when I finally got a diagnosis as I was only 10 but my family were relieved.
Living with a disability can really mess with your mental health. You have an unfair amount of limited desired activities and then there’s you comparing yourself to able-bodied people.
• I wish I can travel around Scotland and Europe.
• I wish I can climb mountains and see the wild world from a bird’s-eye view.
• I wish I can hang out with friends without them feeling uncomfortable having my support workers present. My friends are very active non-wheelchair users who like to go around to places that either isn’t wheelchair accessible or it doesn’t work with my support workers’ schedules and their company’s policy.
• I wish I can wear what I want but with a body like mine there’s not many options. I’ll never be as close to ‘beautiful’ like those models posing for fashion and beauty plastered everywhere.
• I wish I can go to concerts, musicals, any other form of entertainment, etc. But wheelchair spaces are always full and too far away from the stage. I’m registered blind – nope, not bat-blind, just unable to see 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, I know. There are many other things that I wish I can do and have, things that able-bodied people can have, but they just seem impossible. It sucks that my disability is a reminder of that everyday. I feel self-conscious being in my wheelchair because of the way I look. I really wish there were people – like support workers but based around beauty – that put makeup on disabled people – who can’t do it themselves – because of the pain I feel when I see other women wear makeup to help themselves feel confident in their own skin. I wouldn’t even wear heavy makeup, I prefer the copper and natural look. I have had my support workers put makeup on me, like mascara and concealer, but I always end up having wee smudges here and there and it just doesn’t look good.
I live with my parents and two brothers – 7 and 18 – and I rely on two support workers five days a week for five hours a day. I need assistance getting out of bed and to get fed and ready for college, or for a day out when it’s my day off. Having that bit of independence is great. I am currently a student attending Newcastle College, 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 have to admit though, being in mainstream is really stressful, scary and fast-paced. I’m finding it hard to keep up but my tutor says I’m doing ok and to do it on my own time. 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.
You can find examples of my work here:
I have always loved art. It’s probably started through nursery and I remember loving the smell of the paint and – this is weird – I remember loving the feeling of putting on those kiddie waterproof apron jackets! Just random. As I grew older, I found a new way to draw as my arms and hands became weak pre-diagnosis. I had two options available, I used my mouth and feet! I don’t use my feet anymore due to hating the way they look. I even did my primary school cooking lessons with my feet, but the memories make me cringe and feel proud at the same time. I used to have a Nintendo DS and did my drawings and mini animations. I showed Peter Andre how I used my DS when he visited G.O.S.H! As an upgrade, I got my first iPad with a stylus in my mouth when I was 11-12.
My family – especially my mum – my friends, my teachers and anyone that’s ever worked with me, are the ones who encouraged me to pursue a career as an artist. I was in my mid-teens, so me 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 artist’s history due to fatigue. Now I love art… and all kinds of history!
My most 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, to have the things that I can’t have in reality and to see the things that I can’t see in reality. I want my art – linguistic and visual – to give my audience powerful messages. I want to help everyone see things differently, be it the problems in the world that
desperately need attention, or to bring light to those that crave it. When I’m in an imaginary world, that’s the only time I can be who I want to be – no disability to deal with. It’s like heaven. Being creative is an opportunity to learn new things and to share those things with the world. 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.
Your body may be disabled, but your mind isn’t! 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. It may be difficult and challenging to overcome these issues, but isn’t it time to make everywhere wheelchair accessible in today’s world of technology and intellect? Try to be more insightful. We – anyone else who has mobility issues, not just in a wheelchair – 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.