Meet Dee Smith

Name: Dee Smith

Age: 26

Where do you call home? Sheffield South Yorkshire, England

What is your education? I studied performing arts at college, went on to do a creative writing undergraduate degree with honors. Then went on to do a Postgraduate in Psychology. I fell into modeling and creating. But having FA really helped me find my calling by being a disabled advocate. Representing disability honestly and beautifully.

Who do you live with? I live on my own with my fluffy black and white cat in a small apartment.

What’s a typical day for you? A normal day for me involves checking and replying to emails and DMs on my social media. Writing, planning and scheduling photoshoots and creative projects, meetings, podcasts. working out, cleaning, cooking. Chores, shower and bed with my snuggle bug of a cat.

When and how were you diagnosed? I was diagnosed with FA at 19. But I knew something wasn’t right at 16. My balance felt off. Extra work to be coordinated. A blood test gave me a name to my condition.Are there any others with FA in your family? I am the only one in my family with FA.

Describe your transition from walking to walker/wheelchair. My body changed gradually because it’s slow. I went from using a cane to walker, then wheelchair. All choices I made with my independence in mind. My anxiety about existing to rest. I can do what everyone else can but differently. My own way. Adapting to what I can and can’t do.

Do you have any hobbies or special interests? Cleaning and cooking to me is a way I stay active without realising it. It’s movement and fine motor skills. I also love muscle strengthening exercises. Squats, leg lifts, crunches, sit ups. I feel them the most.

What is a good trick to make daily life easier? A good trick I use is to schedule your day in blocks. But always take it one step at a time and don’t rush.

When FA gets you down, what do you think/do to feel better? When FA gets me down (I have my moments) I like not to think about anything. Separate myself from reality for a while. Either read a fantasy book. Or watch a comfort show like Greys Anatomy or Gilmore Girls

What is one way living with FA has POSITIVELY affected your life? FA has opened my eyes to the world around me. Minorities and how eclectic and beautiful people are. Different.

What is a favorite motivational quote of yours? Don’t worry about things you can’t change. Life is too short. Do what makes you happy.

What piece of advice that someone with FA has given you that encourages and inspires you? Be unapologetically you. You are rare for a reason!

Be unapologetically you. You are rare for a reason! Your life is NOT over! Adapt and grow. Trust me.

What is the first thing you want to do when a cure/treatment to FA is found?What is the first thing you want to do when a cure/treatment to FA is found? When a cure and treatment is found I would dance.

“I have FA but FA doesn’t have me.” What does this statement mean to you? It means that I am more than one thing. I’m disabled and talented, smart, funny, loyal, beautiful! I’m a rounded person with FA, it’s not all of me.

How do you live your life in the face of adversity? I live my life to the fullest, my way. It took me years, but now I don’t care what people think. I refuse to let a two second thought from my stranger ruin my day. So I live how I choose.

Tell us a little more about you… I’m the walking epitome of creative. All things art in any form speaks to me. I also love Greek and Egyptian mythology. In June I’m taking an online course at Yale university in Egyptology. History and museums are my happy place. Or the Beauty And the Beast library.

Please also see my blog – London Fashion Week in Wheels – a blog by Ataxia UK’s Friend – Dee.

Interviewed by

Brittany Sommerfield