Name: Megan Dewar
Where do you call home? Lekwungen Territory (Victoria, Canada).
Education/Career: I have recently completed a BA in Environmental Studies, a BA in Sociology, and a certificate in the Human Dimensions of Climate Change. Currently, I am excited to explore the intersection of art and disability while continuing education to become an art therapist.
Who do you live with? I live with my friends, who are also my roommates.
What’s a typical day for you? During the current pandemic and winter days, I spend most time in my home listening to music, doing art, writing for my blog, cooking with my roommates or going for drives. I feel most empowered through the process of creation, so I am constantly immersed in art, craft, and woodworking projects. Additionally, I enjoy contributing to mutual aid initiatives in my community, I currently volunteer and organize with a grassroots food security group and a radical bookshop.
How long have you known you are living with FA? I was diagnosed with FA when I was about 20. The process of medical investigation resulting in a FA diagnosis began with a joke I made to my family doctor. I was at an unrelated appointment and was jokingly chatting about how I had broken my wrists three times in the past six months. My doctor didn’t think this was very funny, and immediately began a medical investigation as to why I kept falling over. My family doctor was able to rush me to get an MRI and CT scan to check for suspected brain or spinal injury /tumor/ aneurysm. After these came back negative, I was bounced around to various doctors and specialists for a few years, before a doctor who had heard of Friedreich's Ataxia briefly during Med school thought to test me for it.
I was watching a movie with a friend when a doctor called me to inform me I had positively tested for Friedreich's Ataxia. Neither the doctor, or I, really knew too much about Friedreich's Ataxia. I figured I’d just google it later, and my friend and I resumed the movie.
Googling it later, resulted in fear and a lot more questions than answers.
Over the past few years, I’ve realized living with FA is not something to be understood through medical interpretations and prescribed prognosis. Living with FA is something I understand through my own lived experiences and others in the FA community. I am grateful to FARA for organizing a space to connect and stay informed about FA.
Are there any others with FA in your family? Nope.
Describe your transition from walking to walker/wheelchair. I have a stubborn tendency, and I thought using a mobility aid would feel like submitting to FA. But I was entirely wrong, using a mobility aid is liberating. In my experience, mobility aids have become an entry point for radical conversations about disability. For example, I’ll be showing off my beautifully hand painted cane one minute, and the next talking about how the medical model of disability is ablest and encouraging a perspective shift to the social model of disability.
What do you like to do to stay active and what type of exercises work for you to stay strong? I love to ride my tricycle. I also enjoy swimming and sitting on swings, these things allow me to experience self-propelled movement but I do not have to do the balancing. In the winter I ride a stationary bike, and do gentle yoga to keep my body moving. I’m also a believer that rest, stillness, and slowness, are a valuable part of staying active.
Do you have any hobbies or special interests? I passionately believe in the process of creation, and enjoy spending my time creating art, and food to share with the community.
What is a good trick to make daily life easier? I listen to music almost constantly, it gives my life the rhythm and grace that my body does not.
When FA gets you down, what do you think/do to feel better? I let myself sit with feeling down, I let myself fully feel and appreciate the sadness, anger, and grief, that comes with FA. And when I don’t want to feel down anymore, I try to express those feelings through the process of creation, be it art, poetry, or a blog post. That usually moves me through my feelings.
What is one way living with FA has POSITIVELY affected your life? A positive effect of FA in my life would be that I’ve met some really amazing people, and I’ve been brought closer to my friends and family though sharing difficult, supportive, and vulnerable moments and processes.
What is a favorite motivational quote of yours? “Nothing about us, without us.” A slogan that originates in 1980 with South African organizers pushing for Disability Justice.
What is the best advice YOU could give a person who has been newly diagnosed with FA? The best advice I could give someone else with FA is that you are the authority and knowledge holder of your own body. You have the ability to advocate for yourself in a medical system that might not be doing that for you.
What is the first thing you want to do when a cure/treatment to FA is found? Call my family. Then dance without inhibition while running through a meadow towards the ocean and then huck a gainer off the dock, swim to the other side, cartwheel out of the water, complete a tumbling routine and land into a pair of Carharts then pick up all my tools and build an accessible community space where I will continue to advocate for disability justice.
"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? This statement makes me think of the parts of my life that aren’t defined by FA, but how they are all entangled in beautiful ways. Living in the face of adversity begins with recognizing how all struggles against oppression are connected, as is the pursuit of liberation. So living immersed in this belief feels like unity and it feels powerful.
Tell us a little more about you… I host and write a collaborative blog that intends to share stories of disability. If you would like to share or write on this platform, please contact me. www.sitdown.blog