Dee’s story - Ataxia UK

Dee’s story

Post Published: January 5, 2022

Hey ataxia fam and friends,

I’m Dee! And I have Friedreich’s ataxia (This is not an AA meeting) I’m so used to people asking ‘Huh? What is that?’ It has become a reflex since my diagnosis five years ago at 19. My response is simply ‘I have a genetic mutation; I am a mutant. I am an X-man.’ To children seeing me in a wheelchair, ‘I’m a mermaid, who hasn’t learnt to use her uncoordinated legs yet’. In reality, I’ve been finding myself all over again.

Completely lost who I was. Who I used to be. I had to rebuild myself anew. Be confident with my disability. Who I am now. I’m a beautiful, strong, confident disabled woman! That took me a long time to accept. But I did things I never would’ve done if I didn’t have FA.

I graduated university TWICE. An undergraduate in creative writing, then a postgraduate in psychology. I got into modelling and used social media to show disability in modelling. With my poetry. Opening peoples eyes to the beauty we deserve and are. Breaking tropes and stereotypes to surprisingly many people who thought otherwise. Ten thousand followers isn’t massive. However, I’m honoured that many people want to follow my journey and help break the stigma of disabled people like me!

That’s my aim! Using my creativity; be it acting, writing, modelling… I aim to help others with disabilities to become happy and comfortable with who they are. Deserving of love and life. Realising their worth like I did.

Friedreich’s ataxia is tough. A step by step, day by day journey. I am tough. I am strong. FA is apart of me. But it isn’t all of me. I’m a disabled woman and proud!

Follow Dee on social media Instagram: @dee_smithxoxo and Twitter @Dee_Smithxoxo Dee Smith

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