Name: Name: Kate Annetts
Age: 38
Where do you call home? Brighton, UK
Education/Career: BA Honors Media Writing
Who do you live with? I live on my own.
What is a typical day for you? I’m an early bird even on days I don’t work. I have recently started exercising and after breakfast I’ll do a workout from YouTube. I work part-time for a local charity for people with disabilities, so some days I do a shift or two there working on reception or doing admin. 2 years ago I got a mobility scooter, which changed my life with regards of how much I could do. I ride it to work and on my days off I can use it to go shopping or to meet friends.
How long have you known you are living with FA? I first noticed I was becoming a bit wobbly in my early 20s although I had always been a bit clumsy. It took 7 years from 2005 to 2012 for confirmation that I had FA.
Are there any others with FA in your family? No.
Describe an adaptation and/or transition you have had to take due to living with FA. I was able to walk unassisted until 2016 when I started using a walking stick. In 2019 I experienced sever back pain due to scoliosis and moved onto using a rollator and a mobility scooter.
What do you like to do to stay active and what type of exercises work for you to stay strong? I do a seated workout on YouTube and I hope to be able to return to the gym once covid numbers have stabilized in the UK.
Do you have any hobbies or special interests? I read a lot and have recently gotten into building Lego and am, currently making the set of Seinfeld.
What is a good trick to make daily life easier? I have a rollator with a tray on to help me carry things around the house which is so useful.
What is one way living with FA has POSITIVELY affected your life? It has definitely made me more compassionate and aware of the struggles disabled people have. Because of this I started working for a local charity for disabled people which I really enjoy.
What is a favorite motivational quote of yours? “Do or do not, there is no try” – Yoda
What is the best advice YOU could give a person who has been newly diagnosed with FA? There is no shame in being disabled. A lot of people put off getting a mobility aid because they feel like it’s giving up but once they do they usually can’t believe they didn’t get one sooner. Don’t struggle because of internalized ableism.
What is the first thing you want to do when a cure/treatment to FA is found? I’d probably travel more. It’s difficult to navigate airports and planes when your mobility isn’t great and there’s still a lot of the world I would like to see.
“I have FA but FA doesn’t have me.” What does this statement mean to you? How do you live your life in the face of adversity? I try to continue living my life as much as possible. I’m fortunate I can still work sometimes and I can still continue to do the things I love with adaptations. I am always happy to try out a new gadget if I think this will mean I can carry on doing something I love and I am grateful to anyone who works to make the world more accessible.
Interview by
Jamie Plourde