New Disability Horizons contributor, Irina Parfenova, shares her experiences of living with SMA in Russia and how she hopes her blog, SMA Experts, will help others with the same disability.
Hi everybody! I’m Irina from Russia and have SMA type 3. Despite my limitations and the lack of awareness about disability in Russia, I’m still able to be useful. We all have something to offer the world… ideas and thoughts that, with the kindness of human nature, can be achieved.
It’s hard to fight all your life when you are lonely. So I decided to start a blog, SMA Experts, where people can share their experiences of living with SMA, enabling them to feel empowered and no longer alone. There are thousands of people all over the world coping with the same disease, and hopefully, in exchanging our personal experiences, we can support each other. Fresh eyes help you to find solutions to problems which seemed impossible.
On that note, I’d like to tell you about three strong disabled women who have inspired me.
Agata Jablonska has SMA type 3, but together with her fiancé Peter, they went cycling to Vienna. In 18 days they got over nearly 1,000km on a specially constructed distance bike. Agatha, who had previously acted as a disabled model for fashion shows of Ewa Minge wanted to prove that disability does not necessarily mean the closure inside four walls and abandoning all dreams.
She has an M.A. in Art from California State University, Fullerton. She belongs to the Vegas Artists Guild and works primarily in watercolour, although she has started using old paints. Karen has been drawing since the age of five. Her favourite subjects were trees and female faces. She paints humoristic pictures of animals and realistic portraits; every work is a masterpiece. Karen has works in five galleries and her greeting cards are being sold in fifteen different locations throughout the West Coast.
She is a successful TV producer and actress. Rolling with Laughter is a one woman play written and acted by Natasha, with a mix of scenes and narration. Every character is real and every line is true. Natasha is currently writing a book and screenplay about her life. She once described her play saying that: “I’m over the moon to be performing my stage play as a benefit night for Muscular Dystrophy Campaign. It’s my true story of how I made it from selling knickers and bra’s on a Midlands market stall to performing in the West End via New York and Hollywood. I promise to make you laugh a lot and show you that living with a neuromuscular disorder does not mean you can’t live your dream.”
By Irina Parfenova
Check out an interview with our very own Martyn Sibley on Irina’s blog. Plus, don’t miss our Q&A sessions with actor David Proud, Paralympic athlete Ann-Wafula Strike and model Shannon Murray.
