Changemaker Profile


I have limb-girdle muscular dystrophy which is a progressive muscle-wasting condition. It mainly affects my arms and legs, but it can also lead to the weakening of my heart and breathing muscles. I was diagnosed with muscular dystrophy around the age of seven and since then, my muscles have gradually gotten weaker, losing most of my physical strength and ability to walk. This means I use a powerchair full-time and rely fully on the help and support of others for all aspects of my daily life.

When I was growing up, I didn’t know many disabled people. Only a very small handful and that included my older sister, who has the same condition as me. So other than my sister, I personally didn’t know or see anyone that was like me or had the same condition as me or used a wheelchair or even had the same experiences, struggles and thoughts about having a disability. I want to be part of representing disabled people, help create inclusion and diversity. I want to be a role model I wish I had when I was growing up with my disability.

Having a disability or rare condition doesn’t make us inspirational or brave for managing to get out of bed in the morning or merely existing. We are not superhuman. We are just human.

Launch Art Exhibition

I am number 17 launched in January 2020 with an art exhibition at the Oxo Gallery, showcasing each changemakers experience. Each changemaker was paired with an artist to create a bespoke piece of artwork, ranging from paintings, photography to physical installation. Below you will find information on the artwork created and the artists profile.


Symbolically, the hibiscus flower is seen as a rare and delicate beauty. Here the flowers bloom and prosper in circumstances that defy their growth. The abstract arrangement grows with determination and motivates the budding shoots nearby. I’ve always been fascinated by the fragility of such flowers and what conditions are necessary for them to prosper. Subsequently I see a resemblance to that of the human condition, and its ability to flourish.

Artist Profile

Rachel Clarke

Rachel Clarke is an emerging Irish contemporary artist whose work traverses both abstracted and figurative works. She explores her work through a variety of tools, such as paint, print & digital. This range is an important aspect of informing her practice.

Hibiscus by Rachel Clarke

This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.

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